By For the Love of Babies | May 07, 2013 at 08:53 AM EDT | No Comments
Every parent looks forward to the day their baby will be discharged from the NICU, but having the baby home is going to present a new set of challenges for you. The more you can be mentally prepared, the easier it should be. Some realities of what you might face once home with your baby:
1- You will be tired…even exhausted!
2- You may be stressed by responding to your baby’s apnea alarms or providing other types of care that would normally be done in a hospital. Adapting to your new role of “nurse” may be a scary change.
3- Your baby may not eat very well. Even if baby was eating well enough in the NICU to be discharged, once home the baby may go “on strike.” You may find yourself spending more time than you’d like trying to get baby to take enough calories to grow. In addition, baby may have troubling symptoms of reflux that may be difficult to relieve.
4- Your friends and family may not understand the level of your new responsibilities, why everything isn’t instantly “all better” now that your baby is home, and why you aren’t constantly overjoyed. They may not have any idea of the trauma you and your baby have experienced. They may not understand why you can’t take baby out or have unlimited visitors.
5- You will be spending a lot of time inside your home; your activities outside the home will be greatly limited for a time. It may be difficult for you to arrange for a babysitter and/or day care for your child, and therefore to get much-needed “alone time” for yourself.
6- You will spend a lot of time arranging for therapists to visit your home and to take your baby to follow-up medical appointments. And then you will spend a lot of time at those appointments. Your stress level will probably increase the further away you live from your baby’s healthcare providers.
7- You might have to arrange for medical supply deliveries.
8- Unfortunately, you may have to spend much more time than you would like dealing with your insurance company.
9- Hopefully these worries will be balanced by the joy of having your child at home with you—finally!
How you can prepare for baby’s discharge:
1- Prepare your home. In addition to the usual tasks of setting up a crib for baby, also set up a cart with easy-to-reach supplies. Consider having your home inspected and if baby is coming home on equipment, make sure your electricity company, etc. is notified.
2- Take any classes your NICU has to offer. These might include classes on how to parent your preemie (and how they differ from full-term babies), how to administer medications, how to perform CPR, and how to correctly use a car seat.
3- Spend the night rooming in at the hospital if this is offered. Most NICUs will give you the opportunity to “room in” to give you a chance to take care of your baby all by yourself—with the nurses still available to you if you call them. This is especially recommended if you are first-time parents, if your baby is going home on any type of equipment such as an apnea monitor or home oxygen, or if you have twins or triplets. If you don’t feel comfortable and confident after one night, you can probably ask to stay as many nights as is necessary for you to feel ready to take your baby home.
4- Accept home services if they are available. If your baby is going home with significant unresolved medical issues, she might be eligible for home nursing services, and all VLBW babies are eligible for Early Intervention developmental services. A therapist will come to your home to evaluate your baby and to work with him/her and with you to ensure the baby is gets all the help she needs to have the best chance to meet developmental milestones.
5- Anticipate and prepare for social isolation during the winter cold virus season, specifically the RSV (respiratory syncytial virus) season which typically runs from November 1st to April. It is not recommended to take your baby out or to have a lot of visitors during this time period if your baby is within the first 6-12 months of life, due to the risk of acquiring RSV from others. Contact with children less than 5 years old is to be particularly discouraged, since they are most likely to transmit this virus. If you have children of your own who are that age, be vigilant about monitoring them for signs of respiratory infections and limit their contact with baby if they have fever, cough, or runny nose. If parents or other caregivers come down with a virus, wear a mask while interacting with baby. Good hand hygiene is in order for all!
6- Be prepared for insensitive comments, even from family and friends. They don’t know what you have gone through, and they don’t understand the effects of prematurity on your baby. Think ahead about how you might respond to questions or comments that upset you.
7- Try to prepare any siblings your new baby might have by giving them a tour of baby’s room, and giving them a “job” in helping you care for baby. Try to carve out special time with your other children so they don’t feel left out or resentful of your new baby.
8- Be proactive about your mental health. Learn about post-traumatic stress disorder, because if you are a NICU parent, you are at risk! Try to avoid any triggers that you may notice are disturbing to you, such as loud noises/alarms, etc. Be vigilant about postpartum depression and watchful for obsessive-compulsive behaviors. Of course, these are difficult to notice in yourself, so listen to friends, family, and professionals if they suggest you might need help for any psychological issues.
9- Acknowledge that coping is going to be a life-long process. Many parents believe that once they leave the NICU, life will get back to “normal,” but it may never be what you thought or hoped would be normal. As your baby grows, if she doesn’t catch up to her age peers developmentally, or if she has more trouble in school than you expect, you will have to process that and mourn the loss of the child you had envisioned you would raise.
10- Be mentally prepared for the possibility of your child’s rehospitalization; about 30% of babies with chronic lung disease require hospitalization for respiratory issues during the first year of life. Just when you think things are going well, your child may end up back in the hospital. This would again cause considerable disruption in your day-to-day life, and it would also bring back all the memories and worries you had about your baby’s health during her first hospitalization. Your risk of depression increases if baby is rehospitalized, so try to stay on top of your feelings if this occurs and get help if needed.
11- Don’t lower your expectations for your child or limit her opportunities unnecessarily. Your baby’s doctors may have indicated the baby is at risk for a poor developmental outcome, but don’t let that limit how you interact with your child. Be sure you provide your baby with love and appropriate opportunities to grow and develop. Ask your baby’s Early Intervention specialist what types of activities are best for your child’s age and condition. It’s natural to be protective of your child, since she may have had to fight for her life, but you can’t let the past completely govern the future. Try to find a balance between protecting her health and giving her chances to do things other children do, especially as she grows older.
12- Schedule some time away from your child, either just for you or for you and your spouse. You need “mental health” time, and your relationship needs nurturing as well.
13- Get connected with a NICU parent support organization in your area and/or online. Having someone to talk to who understands what you are going through can make all the difference!
By For the Love of Babies | February 16, 2013 at 10:26 AM EST | No Comments
These are suggestions to help you be proactive and prepared for meetings with your baby’s healthcare team, so you will feel more “in control” of your NICU experience.You have every right to be partners in the care of your baby, and you are the best advocate your child has.
Preparing for the Meeting:
The healthcare team may request a meeting with you, or you may request a meeting to get more information about your baby’s care plan.People attending might include a neonatologist, neonatal nurse practitioner, social worker, discharge planner, bedside nurse, dietitian, and more.Ask for the meeting to be held in a private place, not at the baby’s bedside.If you have a choice, ask to meet with a doctor with whom you already have a relationship; choose someone who does well at explaining medical terms.Schedule it for a time when both you and your spouse or significant other can attend together.Invite extended family members or support people to be present if you wish.They may be able to hear and absorb information that you may not, and they may be able to ask questions you haven’t thought of.
If you have other children, try to arrange for child care.It will be hard for you to focus on the content of the meeting if your children are present, and some of the discussion may not be appropriate for them to hear.Try to do some research and reading before the meeting to help you understand your baby’s issues.Seek out reliable sources in books, the internet, and other preemie parents, and develop a list of questions.And finally, spend time in the NICU with your baby, getting to know her really well.
The Day of the Meeting:
Visit with your baby before and after the meeting to help you feel connected to her.Ask for a translator if your native language is not English.Hospitals are required to make translator services available to all families.If your spouse or significant other is not able to attend, ask to have him or her included via a conference call.Once the meeting starts, ask if someone on the medical team can take notes for you.This will leave you free to concentrate on processing the information you are receiving.Also ask to have your baby’s diagnoses written down for your future reference.
Consider starting the meeting by stating what you are most worried about and what you want to be sure to discuss, so your concerns can be addressed.The doctor may ask you to tell her what you understand about your baby’s condition.This will help her know where to start and how much to cover.During the meeting, rephrase and repeat back what you are hearing, to make sure you understand what’s being said.Ask for clarification if you don’t completely understand things, including medical terminology.Do not be afraid to ask questions.Ask for visual aids (diagrams, pictures, xrays) if you think they would help you understand things.
The medical team may ask you to make decisions about your baby’s care.Let them know your preference for involvement in decision-making.You may instinctively want to follow their recommendations, or you may want time to think things over and to talk with your family and friends before making any decisions.Either approach is okay.
Difficult topics, which may bring up painful emotions, may be discussed.Don’t be afraid to express your feelings.Ask what caused your baby’s problems.If you have any worries that something you did caused them, ask directly about this, although it is extremely unlikely to be the case.Don’t blame yourself for anything that has happened.
If you are given bad news about your baby’s condition or prognosis, ask if there’s a range of possible outcomes for your child.Next, inquire as to what the doctors consider the likely outcome will be, how sure they are, and whether they have data to back up their conclusion.Then ask what you can still hope for.Try to find the positives.
If the doctors make a recommendation that makes you uncomfortable, or if you are asked to make a tough decision about which you are unsure, ask about the risks, benefits and alternatives of each possible plan of action.Inquire as to what the impact of these things will be on your child’s condition now and in the future, and on your lifestyle.It is important to have as much specific information as possible about what your family life will look like as you go forward.If you need time to think about a decision, say so.If you have personal, religious or cultural reasons for wanting to handle a medical situation a certain way, especially if it is different than what the healthcare team is recommending, try to explain your position so it can be taken into account.
Be an advocate for your child.If you think a second opinion might be helpful, feel free to discuss this with the medical team.Also, let them know what you would like them to do to help you.Can they can recommend books for you to read?Websites with reliable information?Early intervention services for your child?Parent support groups for you to become involved with or peer-to-peer contacts to connect with?As the meeting draws to a close, if you think you would like a follow-up meeting, ask to schedule one.
After the Meeting:
If you need time alone after the meeting, make your wishes known.Consider debriefing with the NICU’s social worker.Oftentimes he or she can help you process the information you received at the meeting and deal with the emotional consequences of things that were discussed.And don’t forget to visit your baby before leaving the hospital.Staying connected to your baby will help you put your discussion into perspective.
You may come away from your meeting feeling frustrated that your questions were not sufficiently answered or that you don’t know what’s going to happen to your baby.Try to accept the unknown, and to understand that doctors don’t have all the answers.Whether you received bad news or good news, remain flexible; things can change at any time.Rely on your faith or whatever coping mechanisms have helped you get through tough times before in your life, including accepting support and help from trusted family members and friends.You should also reach out to others and ask for help if you need it.
Acknowledge to yourself that you will feel a variety of emotions about your baby and her situation: happiness, sadness, frustration, guilt, and even anger.Try not to ride the NICU emotional roller coaster with its extreme highs and lows; instead, visualize that you are riding a merry-go-round, and get off whenever you need to.It’s very important both during your baby’s NICU stay, and after she goes home, to take care of yourself and focus on your own health.A NICU stay is a marathon, not a sprint, and you will need your energy throughout.Recover from your delivery.Get mental health help if you need it.Use your OB as a resource.Don’t worry about every fear.Let go of guilt, the sooner the better.Don’t be afraid to bond with your baby, even if you are afraid she might die.Your baby needs you, and the relationship you establish now will be your baby’s foundation for life.
And finally, remember that half of what you worry about will never happen, and the rest you can handle.
These suggestions were adapted from the following references:
1-Boss RD, Donohue PK, Arnold RM.Adolescent mothers in the NICU: How much do they understand?Journal of Perinatology (2010);30, 286-290.
2-Izatt S.Educational perspectives:Difficult conversations in the neonatal intensive care unit.Neoreviews (2008); 9;e321.
3-Levetown M and the AAP Committee of Bioethics.Communicating with children and families:From everyday interactions to skill in conveying distressing information.Pediatrics (2008): 121:e1441-1460.
4-Sharp MC, Strauss RP, Lorch SC.Communicating medical bad news:Parents’ experiences and preferences.Journal of Pediatrics (1992); 121(4), 539-546.
By For the Love of Babies | November 04, 2012 at 05:09 PM EST | No Comments
Can the smell of hand sanitizer instantly transport you back to a particularly challenging day you experienced in the NICU, bringing tears to your eyes? Is it difficult for you to even drive past the hospital where your baby was in the NICU? Do beeping noises or ambulance sirens make your heart race? Are you awakened by nightmares or troubled by recurring flashbacks to frightening days in the NICU? If you answered yes to any of these questions, you might be suffering from Post-traumatic Stress Disorder (PTSD).
‘But wait,’ you say, ‘I’m not a combat veteran!’ Well, if you are a parent of a baby who was in the NICU—whether a mother or a father—you are sort of a combat veteran. And besides, PTSD is not limited to soldiers returning from war; it can occur in anyone who has seen or experienced a traumatic event that involved the threat of injury or death. Did the thought cross your mind at some point during your baby’s NICU stay that he or she might possibly die? Or even that you (if you’re a mom) or your wife (if you’re a dad) might die as a result of circumstances surrounding the birth of your child? Even though survival for most NICU babies is now very good, many—if not most—parents whose babies enter the NICU still find themselves confronting that most unimaginable fear, the fear of losing their child, even if there has been no direct threat to the baby’s life.
Whether you were able to “hold it together” or did find yourself experiencing symptoms of stress and anxiety during your baby’s hospitalization, you are still at risk of developing PTSD up until several years later. Its occurrence is well-documented in NICU parents. And it doesn’t even depend on how sick your baby was, although you are more prone to develop it if your baby had numerous medical complications. It depends more on your personal response to stress, and whether you’ve gone through other traumatic experiences in your lifetime.
Symptoms of PTSD fall into three main categories: 1- “Reliving” the event through flashbacks, nightmares, or other strong memories; 2-Avoidance, or feeling numb and detached; and 3-Arousal, or having trouble concentrating, startling easily, or being irritable. Sometimes your whole body reacts and you may feel dizzy, as though your heart is pounding, or you may even faint. If you have experienced any of these feelings over at least a thirty day period, your doctor could diagnose PTSD.
If sensations like those described are interfering with your daily life, it is probably time to seek help. A major danger is that as a result of PTSD, you may find yourself so constantly worried about your baby or child that you become overprotective and limit his or her opportunities for exploration and personal growth and development. If PTSD is altering your parenting, it is definitely time to seek help.
It may be that talking with other parents in a support group (whether in person or online) is all the help that you need, or it may be that seeking professional counseling is a better option for you. Some parents channel their feelings of anxiety into productive endeavors like volunteering to help a foundation or even starting their own, making hats or clothes for preemies in their local NICU, or visiting and supporting their NICU’s staff.
But the first step to healing from the trauma of your birth or NICU experience is recognizing that you need help. If you are troubled by any of the symptoms outlined above, you owe it to yourself, your relationship with your significant other, and your baby or child to confront PTSD head-on and get help. You’ll be happy you did.
References
DeMier RL, Hynan MT, Harris HB, Manniello RL. Perinatal stressors as predictors of symptoms of posttraumatic stress in mothers of infants at high risk. Journal of Perinatology 1996;16(4):276-280.
Post-traumatic stress disorder. At http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001923.
Shaw RJ, Bernard RS, DeBlois T et al. The relationship between acute stress disorder and posttraumatic stress disorder in the Neonatal Intensive Care Unit. Psychosomatics 2009;50(2):131-137.
By For the Love of Babies | November 05, 2011 at 10:15 AM EDT | No Comments
Important news for parents everywhere!The American Academy of Pediatrics (AAP) recently announced an expansion of the “Back to Sleep” Campaign to reduce infant deaths from SIDS (Sudden Infant Death Syndrome), now making it a “Safe Sleep” Campaign.As a result of extensive research over the years, new recommendations about safe sleep practices are now available to further lower the rate of infant deaths.
The sudden, unexplained death of an infant is a horrific and tragic experience that can turn families’ dreams of a “happy-ever-after” with their baby into a nightmare.SIDS is the label given to a baby’s death if it can’t be explained after a thorough investigation and autopsy have been completed.Although still not completely understood, SIDS likely results when a vulnerable baby encounters an environmental stressor during a critical period of development.Ninety percent of these deaths occur before the baby reaches 6 months of age, most between 1 and 4 months.
In 1992, the AAP first recommended that babies no longer sleep in the prone position (on their tummies).By 2001, SIDS deaths had been cut in half, a fantastic result of this educational campaign.However, SIDS deaths have not dropped any further since 2001, while infant deaths from accidental suffocation and strangulation in bed have gone up.We now know many of the specific risk factors for both SIDS and for accidental suffocation and strangulation, and by following the AAP’s advice, more lives can be saved.
The AAP’s updated recommendations include the following:
1.Always place your baby on her back (supine) to sleep.Side sleeping is not a safe alternative to sleeping in the supine position, and is not advised.The risk of SIDS doubles when an infant sleeps on her tummy compared with either her back or side, and is even higher when a baby is placed on her side and then rolls into the prone position.You should place your baby on her back for every sleep period, even naps, and make sure all of her other caregivers know to do this as well.Once your baby can roll from her back to her stomach, she can be allowed to remain in the sleep position she assumes.
Right now only 75% of white infants and 52% of black infants are placed on their backs to sleep.Many parents fear their babies will choke and aspirate when sleeping on their backs, but this is not proven to be true.
2.Make sure your baby sleeps in a safety-approved crib, portable crib, play yard, or bassinet; do not routinely let baby sleep in a car seat, stroller, swing, infant carrier or infant sling.One study found the average baby spends more than 5 hours a day in a car seat or similar sitting device.This is potentially dangerous for several reasons.Your baby’s head may flex forward and block her airway, leading to SIDS.And, if her car seat is set on a bed, mattress, or couch, it can overturn and lead to the baby’s suffocation.Do you love snuggling your baby in an infant sling?Just be sure your baby’s head stays up above the fabric of the sling so the baby’s face remains visible, and that the baby’s nose and mouth remains clear of secretions.
3. Have baby sleep in your room but not in your bed.“Room-sharing” and not “bed-sharing”decreases the risk of SIDS by 50%.While bringing baby into bed with you may seem like the natural thing to do as a way to facilitate breastfeeding and bonding, if baby sleeps with you, this doubles to triples the risk of SIDS.When infants sleep in the same bed with others (whether with parents, other infants or children), they may become overheated, obstruct their airways, suffocate in soft bedding (especially if sleeping on a couch or armchair), become entrapped, fall or strangulate.If your baby is less than three months old, was born prematurely or with a low birth weight, or if you and/or your partner are a smoker, the risk to baby of sharing your bed is even higher.The same is true if you or your partner consume alcohol before going to bed.
Even twins, triplets and other multiples should sleep in their own beds to minimize their risk of SIDS and accidental suffocation.
Having baby sleep in your room allows you to stay close to her and makes feeding, comforting and monitoring her easier. Baby can be brought into your bed for feeding and then returned to her crib or bassinet afterwards.
4.Avoid soft bedding at all times; this can increase the risk of SIDS by a factor of five, no matter what position baby sleeps in.You may think you are making your baby more comfortable by using pillows, quilts, comforters, and sheepskins, but these items should never be placed directly under the infant or left loose in the infant’s sleep area, or be used to create a barrier to keep the infant from falling off an adult bed or couch.
Infants should sleep on a firm surface without any soft or loose bedding.Blankets can be used only if they are thin and are tucked under the mattress to avoid covering the baby’s head or face.
5.Do not use wedges, positioning devices, and bumper pads in your baby’s crib.These products have all been associated with infant deaths from suffocation, entrapment and strangulation.
5.Breastfeed your baby; it protects against SIDS.Breastfeeding also protects against infectious diseases (diarrhea, respiratory infections) that may make a baby more vulnerable to SIDS.Once again, remember to return your baby to her own bed after breastfeeding.
6.Consider offering your baby a pacifier at both naptime and bedtime, because this practice decreases the risk of SIDS by 50-60%.Exactly how pacifier use works to decrease the risk of SIDS is not well understood.It may be that using a pacifier enables a baby to be aroused during sleep more easily, helps maintain the airway in an open position, and makes it easier for baby to more effectively regulate her breathing.Even if the pacifier falls out of baby’s mouth shortly after the baby falls asleep, pacifier use has been found to be protective.
You may be concerned that pacifier use will interfere with breastfeeding, but recent studies do not support the notion that using a pacifier interferes with either duration or exclusivity of breastfeeding.You can wait to introduce a pacifier until you are confident breastfeeding is going well.
7.Avoid overheating and head covering.Bedrooms should not be too warm, and good ventilation is important.Avoid use of blankets or anything else that could potentially cover baby’s head during sleep.
8.There is not enough evidence to recommend swaddling as a way to reduce the risk of SIDS, although it may encourage supine sleeping.Swaddling may calm infants and help them sleep longer, but there is no definite benefit to swaddling as a way to avoid the chance of SIDS.
9.Vaccinate your infants according to current guidelines of both the AAP and CDC.The risk of SIDS is cut in half by immunization, which suggests that vaccination may be protective against SIDS.
10.Do not rely on infant home monitors as a strategy to prevent SIDS, although home monitors can be used in infants who have already had an apparent life-threatening event.
So much is now known about how to prevent SIDS and infant deaths by suffocation and strangulation.Be proactive and put this knowledge to work in your own home; you may save your baby’s life.If you have any qualms about following any of these recommendations, please discuss them with your baby’s healthcare provider.Click here for the link to the AAP’s complete set of Recommendations for a Safe Infant Sleeping Environment.
By For the Love of Babies | November 01, 2011 at 11:43 AM EDT | No Comments
Fear vs. Hope in the NICU
Parents of preemies usually come into the NICU in a daze, or as one mom described it, “in the middle of a storm.” The storm of emotions may include shock, sadness, anger and guilt about their unexpected premature delivery. Parents feel their lives are rapidly spiraling out of control, and sense that their baby is slipping into a remote realm where they will be stripped of a meaningful role as parent. And, to make matters worse, parents recognize immediately that they are in a foreign environment where a different language—one they don’t know yet—is spoken. Fear is an ever-present emotion, as every NICU parent will tell you, including the ones who share their narratives here.
Parents of preemies face a challenging task: how to balance their fears with their hopes. As one NICU dad told me, “We are scared out of our minds.” Parents are scared that Baby might not live, scared that Baby might suffer disabling complications, and scared that Baby might have lifelong problems. The unknown future stretching out in front of them can be terrifying; they don't know what will come next, or even how they will handle it when it does come. On the other side of fear is hope. But, if hope doesn’t balance fear—or better yet, win out over it—fear will overwhelm parents, leaving them feeling so depressed or stressed out that they can barely function.
There is a lot to hope for in a NICU. Most parents have heard stories of preemie miracles made possible by both the advanced technologies now available and the meticulous care of the medical staff. They fervently hope their baby will be the next miracle, and that their long-held dreams of growing their family will come true.
NICU staff, both doctors and nurses, can help tip the balance from fear to hope. Whenever I admit a tiny or critically ill baby to the NICU, the primary message I try to communicate to parents from the get-go is, “We don’t know where your journey will take you, but we will be with you every step of the way.” The road through the NICU is long and winding, with lots of hairpin curves to get around, many seemingly impossible hills to surmount, and plenty of deep valleys to tumble into. At times, parents may feel like they are trapped in a cruel game of Chutes and Ladders, as their baby progresses nicely one day, only to have a setback the next.
It is an arduous, frightening journey for parents, and sometimes even for staff. As medical caregivers who guide parents on their journeys, we need to let them know that they are indeed their baby’s parents, and we doctors and nurses are merely privileged to be the baby’s stewards through this part of their lives. We will not replace the parents in their baby’s heart, nor is their baby ours to keep. We need to do everything we can to encourage bonding between parent and child (think Kangaroo Care), and to strengthen parents’ confidence in their roles, giving them hope while continually acknowledging and validating their fears. To minimize their feelings of helplessness, we need to show them how they can help care for their fragile baby—empower them—even if their own hearts race with anxiety while doing so.
We need to respect where parents are on their emotional journeys. We must give them time to sort out their feelings and to find their “new normal.” It may take months. As one father confided in me, “Don’t assume we are okay when we seem to have a handle on everything. I just acted strong for my wife. I was a mess inside. It wasn’t until the end of the third month of our four month NICU stay that I really got a handle on things.” Patience is more than a virtue for medical staff; it’s a necessity. Compassionate patience, that is.
We should encourage dialogue with parents as our partners, and really listen to what they say about both their fears and hopes. We must let them decide what to hope for. If their hopes seem unrealistic to us, we need to tread lightly. Because without hope, how can parents keep going forward? And the NICU staff’s best hope for parents should be that they ultimately feel good about themselves as parents, when they finally get to take home the healthiest baby we can give them.
This article first appeared on November 1, 2011 on the website Inspire.com as the Foreword to their report, "Narratives from the NICU: Neonatal intensive care units through the eyes of parents."
By For the Love of Babies | September 08, 2011 at 09:39 PM EDT | No Comments
If you’ve had a baby in the Neonatal Intensive Care Unit (NICU), you know how emotionally draining the experience can be.And if you haven’t yourself, but know someone who has, understanding more about the emotions they might go through can help you support them.
A parent whose baby requires care in the NICU, either due to premature birth or some other condition, goes through a wide range of emotional ups and downs.A normal first reaction to being told your baby must be admitted to the NICU is fear:Will my baby make it?Will he be okay?Will she be normal after her NICU experience?Sometimes these questions can’t be immediately answered by the doctors, forcing parents to go through an uncomfortable and sometimes very prolonged period of uncertainty.
For many parents, a second reaction is to grieve the parenting experience they had hoped for.Everyone hopes that their baby will be born close to their due date and will do well, spend time rooming in with them at the hospital, and go home when they do.NICU parents may have given birth weeks before they were ready to, only to have their babies taken away from them to go to the NICU.The NICU is a place where it’s usually hard for parents to feel like they are still the parent; understandably, they often feel they are losing control over their baby.This can interrupt parents’ bonding with the baby and leave them feeling helpless or even useless, wondering exactly what their role is.
If their baby’s NICU stay is prolonged, or if parents keep getting bad news from the baby’s medical team, parents may develop an acute stress syndrome.The constantly ringing monitor alarms, the experience of frightening apneic spells in which baby might turn blue and need resuscitation, and need for surgeries and other invasive procedures may all add up and overwhelm parents’ abilities to cope.One sign of acute stress syndrome is when parents begin to stay away from the NICU and even stop calling to check on their little one.Other signs are when parents find themselves flinching at all the monitor alarms, becoming irritable at seemingly everything, or alternatively not showing any emotional response when interacting with the medical team around their baby’s care.Some parents may simply “shut down” if they become so overwhelmed and frightened.
Not surprisingly, NICU mothers are at higher risk to develop post-partum depression than mothers who give birth to healthy babies, a risk that is ordinarily about 10-20%.In addition, a mother who has previously suffered from depression is somewhat more likely to develop post-partum depression.This may show up as excessive tiredness, poor appetite, sadness, inability to sleep, and rapid mood swings.Meanwhile, fathers are fighting their own battles.Expected by society to be the “strong one,” many fathers feel equally overwhelmed by the NICU experience and may feel especially upset that they can’t “do” anything to “make it all better,” which they often perceive to be their usual role in the family.
Even if parents do not experience acute stress syndrome, they are still at risk to develop post-traumatic stress syndrome, and according to recent studies, fathers may be especially likely to develop PTSD.If they’ve not been able to deal with their feelings during the baby’s NICU stay, these emotions and anxieties may surface later and take the form of nightmares, anger, irritability, depression or numbness.Parents with PTSD may find themselves overreacting to loud noises that remind them of monitor alarms, worrying excessively about even minor problems their infant may have, or “falling apart” or lashing out at the slightest reminder of their baby’s NICU stay.
Some other big issues that may weigh new parents down are the financial realities of having a baby in the NICU with high hospital bills looming on the horizon, the possibility of reduced income because of the need to miss work, and the costs of traveling to visit the baby and obtain meals at the hospital during visits.
NICU parents should proactively seek out resources to help them cope while their babies are in the NICU and beyond.A good place to start is with the NICU’s social worker.Parents should ask if the NICU has parent or family support groups or a program where current NICU parents are paired with former NICU parents in a peer support program. If needed, they should also inquire if financial help, such as gas vouchers and meal passes, is available.If parents don’t live in the city where the NICU is located, they should check to see if there is a Ronald McDonald House where they can stay at very low cost.Parents can look online to find support groups for NICU parents generally or for one dealing with their baby’s specific diagnosis, whether the baby is a preemie, has a birth defect, or some other problem.These groups abound on facebook and can also be found through google searches.Obstetricians or mother’s other primary care doctors can be good resources with whom to discuss possible need for medication if post-partum depression is severe.
Parents should also request a care conference with their baby’s doctors, to bring them up-to-date on the full range of tests their baby has already had, what is expected for the future, and an overall status report on their baby’s progress.The doctors should be able to guide parents to trusted information sources on the internet relevant to their baby’s condition, or parents can do their own research.The more information parents have, the better they will be able to understand what’s happening with their baby and to make informed decisions, should the need arise.
Another important way for parents to cope is to ask, early on, how they can become involved in their baby’s care.When can they take the baby’s temperature?Change his diaper?Give her a bath?Hold him?Feed her?Do kangaroo care (skin-to-skin contact)?The more parents can regain their role as mom or dad, the better they will feel.Parents can also ask the nurses how to best interact with their baby, as far as touching the baby, understanding the baby’s cues, and talking to the baby.Babies who are premature or ill can be extremely sensitive to sound, light, and touch, and can be easily over-stimulated; the NICU nurses will be able to guide parents in finding what type of interaction is soothing to their baby.
Friends and family members can do a lot to help NICU parents get through their experience.They can offer to provide meals and transportation to new parents, run errands, babysit their other children so parents visit their NICU baby or even have time to themselves, and most of all, to simply be understanding listeners.
NICU parents need to talk, and this need doesn’t stop when the baby is discharged from the NICU.It may take parents a good bit of time to process everything that happened to them and their baby, and their anxieties may continue full force if the baby continues to have problems at the time of discharge.Parents may also be especially nervous around the time of the baby’s homecoming because they are leaving an environment where their baby has been monitored and attended every moment of the day, and now they themselves will be solely responsible for the baby’s care.They may be inclined to recreate the NICU environment with all of its structure, which may not lend itself well to a family experience.They may be stressed trying to integrate the new baby into their routine with the other children in the household, or stretched to the limit when they have to return to work.
Friends and family can be helpful by understanding what NICU parents are going through both during their baby’s NICU stay and sometimes for months afterward.Here is a link to an article that lists some ideas of what to say and what not to say to parents of preemies (http://commonhealth.wbur.org/2011/06/insensitive-remarks-preemies/).Most of all, those who are close to NICU parents need to understand that it’s not easy being a NICU parent, even if the baby ultimately comes home with a clean bill of health.
(This post first appeared on peekabooICU.net webpage as a guest blog written by Dr. Hall.)
By For the Love of Babies | July 17, 2011 at 11:49 AM EDT | No Comments
An alarming statistic is that black infants born in the U.S. have more than double the chance of dying during their first year of life compared with white infants. (1) The death rate for black infants born here is as high as it would be if they were born in a developing country. The following facts surely have something to do with the poor survival rates of black infants in the U.S.: Twice as many blacks as whites live in poverty (20% vs. 10%), and nearly twice as many blacks as whites are among the 45 million people in this country who lack health insurance (43% vs. 24%). (2, 3)
Infant mortality (death within the first year of life) is most often a consequence of preterm birth (before 37 weeks gestation) and low birthweight. It’s no surprise, then, to learn that the rate of preterm birth is much higher in black women than in white women. In fact, the rate of preterm birth in black women in America is higher than it is in black women in Africa (18.5% vs. 11.9%). (4) Besides poverty and lack of access to healthcare, other factors such as psychosocial stress, bottle-feeding, exposure to lead, intrauterine growth and diet also play into the health of a mother and her infant. (5)
Racial disparities in infant mortality between blacks and whites are nothing new, but they’re not improving. However, a recent three year study in Ohio shows one way they might be changed: Prenatal participation in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) dramatically reduced the racial disparity in infant mortality rates among participants. While infant mortality rates among non-participants was 21% for blacks vs. 7.8% for whites, black women who did participate had infant mortality rates in line with white participants’ (9.6% vs. 6.7%). (6)
Other specific factors have been linked to increased infant mortality, including inadequate prenatal care, younger maternal age and lower educational levels. It only makes sense, then, that earlier initiation of prenatal care, and access to risk-appropriate OB and neonatal care would help improve outcomes in populations at risk. Programs to support parenting of premature and low birthweight infants should also help improve infant mortality statistics. (7)
We can also learn from the European and Scandanavian countries which have laudable, low rates—far lower than ours—of both preterm birth and neonatal/infant mortality. Their numerous social programs supporting pregnant women have been instrumental in achieving these results. In many of these countries, paid maternity leave begins 6-12 weeks before birth, with a specific eye towards minimizing preterm births. Mothers also have access to sick leave from their jobs after birth, which may or may not be paid. Prenatal care is comprehensive and free. Other supports include housing and social supports for more vulnerable populations of women. (8)
Our infant mortality rate is a national embarrassment—we rank 28th out of 32 countries in the world, falling behind such countries as the Czech Republic, Slovenia, Estonia, Greece, Hungary, Poland, Slovakia and even Cuba. (9) The major solution to improving our infant mortality rate is to first improve our preterm birth rate, and especially to work towards minimizing the differences in outcomes between blacks and whites. This will require reordering our priorities and putting some political muscle into the mix. Money spent upfront to prevent preterm birth will go a long way towards reducing the current economic burden related to preterm birth, estimated by the Institute of Medicine in 2006 to be 26 billion dollars. (10) Hopefully, the emotional burden of losing a child too early can be lessened as well.
Please help the March of Dimes in their mission to help moms have full-term pregnancies and research the problems that threaten the health of babies.
References:
(1) “U.S. Infant Mortality Rate Decline Stalls, Racial Disparities Remain, CDC Data Indicate.” Online at http://www.medicalnewstoday.com/articles/116767.php.
(2) Income Inequality: Millions Left Behind. February 2004. Third Edition. Americans for Democratic Action, Inc. Washington, DC. Online at http://www.inequality.org/incineqada.pdf. Accessed June 29, 2004.
(3) Snyder, U. “Preterm Birth as a Social Disease.” Medscape Pediatrics, May/June, 2004. Online at http://www.medscape.com/viewarticle/481732.
(4) March of Dimes. “Preterm Births Rise by 36 Percent Since Early 1980s; Late Preterm Infants Drive the Increase,” Press Release January 7, 2009.
(5) Fiscella, K. “Racial Disparity in Infant and Maternal Mortality: Confluence of Infection, and Microvascular Dysfunction.” Maternal and Child Health Journal 2004;8:45-54.
(6) Khanani et al. “The Impact of Prenatal WIC Participation on Infant Mortality and Racial Disparities.” American Journal of Public Health 2010 Apr 1;100 Suppl 1:S204-9. Epub 2010 Feb 10.
(7) Kitsantas & Gaffney. “Racial/Ethnic Disparities in Infant Mortality.” Journal of Perinatal Medicine 2010;38(1):87-94.
(8) Williams BC. “Social Approaches to Lowering Infant Mortality: Lessons from the European Experience.” Journal of Public Health Policy 1994;15: pp. 18-25.
(9) Dezen & Lynch. “Babies Born Just a Few Weeks Too Soon are Three Times More Likely to Lose the Battle to Survive.” Press Release from March of Dimes, May 3, 2010. Online at http://www.marchofdimes.com/news/may3_2010.html.
(10) Institute of Medicine. “Preterm Birth: Causes, Consequences, and Prevention.” National Academies Press, Washington, DC. July 13, 2006.
By For the Love of Babies | July 17, 2011 at 11:34 AM EDT | No Comments
About 3,000 babies are born every year in the U.S. with either anencephaly or spina bifida; these are serious birth defects (also known as neural tube defects) in which the baby’s skull and spine do not completely close during prenatal development. If a woman takes folic acid, a B vitamin, before and during pregnancy, she can reduce the incidence of her infant being born with one of these defects by 50-70%.
One thousand more infants per year are now born healthy since a national campaign began in 1998 to encourage women capable of becoming pregnant to take 400 micrograms of folic acid daily to prevent these defects. Women should begin taking folic acid at least one month before conceiving and continue throughout pregnancy. The recommended daily amount of folic acid (400 micrograms) can be obtained by either taking a multi-vitamin daily (most will have 100% of the daily value of folic acid, check the label) or eating one bowl of fortified cereal every day. Such cereals include Raisin Bran, All-Bran, Special K, Quaker Oatmeal, and many others (again, read the labels to ensure the product provides 100% of the daily value of folic acid). Folic acid is also found in orange juice, peas, broccoli, lentils, asparagus, and spinach.
The annual costs for medical and surgical care for people with spina bifida is more than $200 million. Lifetime care for a single child born with this condition is estimated to be $560,000.
One of the chapters in FOR THE LOVE OF BABIES is about a mother who gives birth to a baby with anencephaly; in this story, the importance of taking preventive folic acid is reiterated. You can also read more about the importance of folic acid during pregnancy on the CDC's website here.
By For the Love of Babies | July 17, 2011 at 11:31 AM EDT | No Comments
It seems like reducing our healthcare spending is on everyone’s minds these days. Want to know a good way to cut our costs while simultaneously creating a major win for today’s babies and families?
The solution sounds simple enough: If 90% of American babies were exclusively breastfed for the first six months of their lives, we could save $13 billion in healthcare and other costs and save nearly a thousand lives (mostly infants) each year! This is the conclusion of a recent study published in the journal Pediatrics.1
Amazing statistic, isn’t it? How is that even possible, you might ask?
Breastfeeding helps establish babies’ immune systems and is protective against a wide variety of infections, especially diarrhea, ear infections and pneumonia. In addition, breastfeeding helps decrease the incidence of many other serious conditions that can lead to chronic health problems, expensive hospitalizations, and sometimes even death: asthma, atopic dermatitis, SIDS, type I diabetes mellitus, childhood leukemia, and childhood obesity. There are health benefits for mothers who breastfeed, too, including lower rates of breast and ovarian cancer.
Human milk can serve as a complete source of babies’ nutrition during their first six months of life. They don’t need any formula or baby food at all. But, although 75% of mothers start out breastfeeding their babies, by the time babies reach six months of age, only 13.3% of their mothers are still giving them only breast milk.
The Surgeon General has just issued a “Call to Action” with numerous ideas on what can be done to help make breastfeeding easier for all mothers. Recommendations include providing support and education to both parents about the benefits of breastfeeding, strengthening community resources that promote exclusive breastfeeding, improving healthcare workers’ knowledge and support of breastfeeding, and encouraging workplaces to become more accommodating towards women who desire to continue breastfeeding after returning to work.
The goal of the government’s Healthy People campaign is for at least 50% of mothers to exclusively breastfeed for the first six months. It would be a great win for America’s babies and children if we could meet and even exceed that goal; as a society we would win by reaping huge economic savings.
You can read the Surgeon General’s Call to Action to Support Breastfeeding here.
1Bartick M & Reinhold A. “The Burden of Suboptimal Breastfeeding in the United States: A Pediatric Cost Analysis.” Pediatrics 2010;125:e1048-e1056.
By For the Love of Babies | July 17, 2011 at 11:23 AM EDT | No Comments
Did you know that three in ten American girls get pregnant by age 20? That adds up to 2,000 teen girls getting pregnant every day. Over the course of a year, four hundred thousand teenagers, half of whom are 17 years old or less, give birth. Our teen pregnancy rate is twice that of any other advanced country, and nearly ten times as high as Japan’s, despite similar levels of sexual activity. However, after reaching a peak in 1990, the teen pregnancy rate is now at a record low, at 39 births among 1,000 teenagers, a positive change that has been attributed to the more widespread use of condoms. Still, more than ten percent of all U.S. births are to women less than 20 years old, and one fourth of moms younger than 18 go on to have a second baby within 2 years after the birth of their first one.
Babies born to teens are more likely to end up in the NICU than babies born to mothers older than twenty, because of their high rates of prematurity and low birthweight. Teens are the least likely group of women giving birth to get early and regular prenatal care, and they’re also smokers more often than mothers over 25. They are at higher risk for complications of pregnancy such as pregnancy-associated high blood pressure (pre-eclampsia) and premature labor. Their infants are less likely to survive to their first birthdays, compared with women who give birth in their twenties or thirties.
In addition, consequences of teen pregnancy are far-reaching. For the young mothers, they include being a single parent, living in poverty and depending on welfare, and failing to continue education beyond high school (only 40% graduate). Children born to teen moms tend to have educational problems, too. They are fifty percent more likely to repeat grades in school and to drop out of high school than kids whose mothers gave birth in their twenties or beyond. They are more likely to be victims of child abuse and neglect, to have worse physical health, and to have a higher a rate of incarceration when they become adults than children born to mothers who delay childbearing. Costs to society are substantial: About $4 billion a year is spent providing public benefits to support the health and welfare of teen parents and their children, and the total increases to $9 billion if costs for foster care, incarceration, and other social services needed to manage the negative consequences of teen pregnancy are included.
Which teens are most at risk for becoming pregnant? Those who are doing poorly in school, who are economically disadvantaged, and who have single parents or parents who were themselves teens as first-time mothers.
How are teen pregnancies best prevented? Teens themselves say that their parents’ influence is the most important factor in helping them to avoid pregnancy. Parents need to talk with their teens honestly about sex, love, relationships and responsibility, not just once (“the talk”), but repeatedly from a young age, always in an age-appropriate way. Parents need to tell teens directly why teen pregnancy is a bad idea. Perhaps surprisingly, the MTV reality show, “16 and Pregnant,” may be a positive force in preventing teen pregnancy. Eighty-two percent of teens who watch the show say it has helped them understand the challenges of teen pregnancy and parenthood, and why they should avoid it. The show can be a good launching off point for conversations between parents and their teens.
School or community-based educational programs are more likely to be helpful if they are comprehensive sex education programs that review specifics of contraceptive use. Teens who have been through abstinence-only education tend to have sex at a similar rate to those who’ve been through comprehensive sex education programs, only they use birth control less frequently.
With more open dialogue between parents and teens, and more sex education that focuses on specific ways to avoid pregnancy, besides abstinence, the teen pregnancy rate can be further reduced.
Several parents in my book, FOR THE LOVE OF BABIES, are teenagers. Read their stories in the book, now available on Amazon's and Barnes and Noble's websites.