TIPS FOR PARENTS TO HELP SURVIVE THE JOURNEY BEFORE,  DURING, AND AFTER THE NICU AND IMPROVE INTERACTION WITH NICU STAFF.

By  Olachi Mezu-Ndubuisi, MD, OD

 

1. THE HIGH RISK PREGNANCY:

a. Do I have a High Risk Pregnancy?: You have a high risk pregnancy and are at risk of having a baby in the nicu if you or your baby have any of the following conditions:

i. Pre-eclampsia, Pregnancy – induced hypertension, or chronic hypertension

ii. Twin or Multiple pregnancy; Twin –to-Twin transfusion

iii. Gestational diabetes or h/o long-standing Diabetes

iv. Genetic or Chromosomal Abnormality of you or baby

v. Placenta Previa or Accreta

vi. Abnormal Bleeding during pregnancy

vii. Premature Rupture of Membrane or Leaking amniotic Fluid

viii. Premature Contractions or Labor before 37 weeks of gestation

ix. Oligohydramnios (low amniotic fluid0 or Polyhydramnios (high level of amniotic fluid)

x. Chorioamnionitis, Abnormal Discharge or Foul-smelling Amniotic Fluid

xi. Prolonged Rupture of Membrane

xii. Fever or other signs of maternal infection like abnormal white count in the CBC

xiii. Incompetent Cervix

xiv. Maternal age above 35

xv. Congenital Heart Disease (evidenced by ultrasound on baby)

xvi. Autoimmune disease like SLE (can cause heart block in baby’s)

xvii. Severe anemia or Bleeding Disorder

xviii. Intrauterine Growth Retardation

xix. Smoking during pregnancy

xx. Alcohol Drinker

xxi. Illicit Drug Use during pregnancy

b. What Next?

(i) Perinatology Consult: If you are at risk for a high risk pregnancy, you will be seen more frequently than those with normal pregnancies by your Obstetrician; and you should also consult with a perinatologist as soon as possible or your Obstetrician can recommend one.  Perinatologists are obstetricians with extra training in maternal-fetal medicine and are well versed on conditions of high risk pregnancies and can advise you and your Ob better about needed tests, realistic expectations, course of action based on your condition. Perinatology Centers have expert staff that includes perinatologists, registered nurses, certified sonographers (experts trained to perform ultrasound testing); and support personnel — all dedicated to the highest standards of care. Diagnostic tests that may be recommended for you may include: high-resolution ultrasound, fetal heart studies and echocardiograms, umbilical blood sampling, and genetic tests such as amniocentesis, chorionic villous sampling, and screenings for Down syndrome and spina bifida; as well as services like counseling for genetic conditions such as cystic fibrosis, Tay-Sachs disease, sickle cell anemia, etc. One must avoid smoking, alcohol use or illicit drug use during pregnancy as these are dangerous to the baby and can affect the baby’s growth , development, and overall wellbeing.

(ii)NICU Consult:

Your Ob will at some point also request a consult with a Neonatologist or Neonatal Pediatrician. During this consult, feel free to ask questions about prognosis for your baby at the current gestational age; what to expect in the delivery room or OR ; and what to expect about the care your baby in the NICU. You can request a tour of the nicu to become familiar with it so it is less intimidating when your baby actually goes there. This is the time to consider breastfeeding because of the numerous immunological benefits for the baby especially a sick or premature baby. You neonatologist or pediatrician can talk to you about it and may also have a lactation specialist visit with you.

(iii ) Rest Up:

Most often, you will be asked to restrict your activities in a high risk pregnancy or follow a certain diet (diabetics), or in some cases you may be placed on bed rest at home or sometimes, your doctor may feel it is safer to admit you in the hospital for a period of bed rest till your delivery or for a short while. The wait can be just as stressful. You are wondering and dreading the possibility of your baby in the nicu:To be or or not to be. Relax and stay positive: Positive thinking is a powerful tool to calm yourself and relax. This does not mean you will not be realistic; but if you have high blood pressure relaxing your body will go a long way to reducing your blood pressure and possibly prolonging your pregnancy. Read up on your particular condition and take care of your self. Find ways to relax your body with music, massage, praying, reading a good book, even while in the hospital; or talking to family and friends about your emotions. Visitors care and mean well, but sometimes too many can get you excited and sometimes stressed out.  Feel free to let people know when you need your rest and some quiet time.

(iv)Treatment that can save you and your baby:

Depending on your condition or that of your baby, your doctor will suggest options of manangement best for you. The baby’s well-being will be monitored frequently using the biophysical profile scoring , heart beat monitoing, growth assessments and ultrasound. If prematurity is imminent, you may be given bethamethasone steroid IM shots ( 2 injections 24hrs apart) to speed up lung maturity of the baby. In most hospitals it is given only from 24 weeks gestation through 33 or 34 weeks. Ask your Ob when if it is recommended for you. You may also be started on antibiotics if you GBS positive or there is significant risk of infection in the case of prolonged membrane rupture or chorioamnionitis. Almost all mothers having c-sections will get prophylactic antibiotics these days.

2. THE BABY ARRIVES AND WELCOME TO THE NICU :

a. This is quite an overwhelming experience for anyone. The whole birth process is usually a blur. For any birth : vaginal or c-section, plan to have a spouse, partner, or family member with you to relax and support you through it. You may have been expected a premature baby or known that you baby needs intensive care right after birth; but that does not in anyway alleviate the pain or anguish you feel on seeing your baby taken away. You may have had an uneventful pregnancy and suddenly, you baby is not breathing well or something is wrong during or after delivery and suddenly you baby is taken to the nicu before you have had a chance to see him or her.

b.  Always ask to see your baby before he or she is taken away. There is NO reason for a mother not to be able to see her newborn baby even for a second unless she is unconscious after the delivery. You can touch or kiss your baby gently before he or she is taken away.

c. You may feel distant from the baby at first; but try to remember that you will get to know your baby with time and feel like a mother or father soon. Just that it will be occurring in the nicu and not the comfort of your home over the next few days, weeks or months; and will be challenging initially.

d.  Get to know the people taking care of your baby: Get to know your baby’s doctors, nurses, and therapists. Be courteous and respectful but always ask questions especially if you don’t understand what is being said.

3. GOING HOME WITHOUT YOUR BABY:

This is a very emotional and difficult time for parents. It is anguishing to be discharged home and leave your baby behind in the nicu. You do not feel like a new mother coming home empty handed. I was most miserable and heartbroken the day I was discharged and had to go home, leaving my two babies fighting for their lives in the nicu. I wanted to stay back with them. Take comfort in the fact that your baby is safe in the hospital and getting the help he or she needs. Remember also that you need to rest inorder to be strong for them. Arrange ahead of time for transportation to the nicu if you live far from the nicu or out of town. Also if you had a c-section, you will be unable to drive for a few weeks, so a family member of spouse may need to drop you off in the nicu to visit your baby on their way to work ; and pick you up on their way back.

4. BE PART OF THE CARE TEAM FOR YOUR BABY:

You are vital to the nurturing, growth and progress of your baby; and have to see yourself as part of the overall developmental and nurturing team of people takig care of your baby.  I believe that the staff and parents are in a partnership when caring for the baby in the nicu. One cannot work effectively without the other.

a. Initially, the NICU may appear intimidating and alien with monitors, new terms and words and equipment you’ve never seen before. Take your time and get to know what is around you and all that is connected to your baby including medications, catheters, tubes, and monitors. Your nurse will help you get familiarized with your baby’s space.

b. Learn the names of those that care for your baby including doctors, nurses, and tell them your baby’s name. A name card can be placed somewhere on the incubator or crib with his/her first name so everyone can get used to saying it. It helps you and the medical team connect with the baby and all realize that your baby is a little person with normal needs and deserves respect and acknowledgement.

c. You alone can love your baby in an unconditional way, more than anyone caring for them, so your presence in the nicu especially in the early days of your baby’s arrival is vital. They have been suddenly separated from the warmth and comfort of your womb and no longer hear the familiar comforting echoes of your voice. You need to continue talking soothingly or gently touching your baby when you visit the bedside. Be aware however that over-stimulation may not be good for the baby esp. if they are clinically unsatble; so your nurse will let you know what type of touch is appropriate at each stage for the baby.

d. As soon as you are told your baby is ready, learn how to feed, change, soothe and hold him. You will be amazed at how quickly you can do what might have at first seemed intimidating. Find out from your baby’s nurse what other things you can do for your newborn.

e. Be your baby’s advocate and feel confident about speaking up respectfully about concerns about his or her care. Notify your nurse if you think your baby is not acting right or something is wrong.

f. Parents usually spend more time at the bedside more than any staff and soon eventually get to know your baby in a way no-one can.  Do not hesitate to notify them of your baby’s unique mannerisms that you have learnt, what soothes him or her, or what upsets him or her like noise, music, sleeping on their tummy etc. At ObiolaRose Twin Angels Foundation, our unique NICU bed signs available at our book store are an invaluable guide for you and will help the staff know anticipate and know your baby’s unique social needs.

g. Ask about tests your baby had and results of test results. Follow up with your baby’s progress and see what ways you can assist the medical team. You can write down your questions and comments so you don’t forget them. Keeping of simple log of your baby’s activities or results may be helpful, but do not get carried away with details. It is more rewarding to spend quality time with your baby.

h. You should be included in making major decisions about your baby’s care and treatment; and ask to be informed or called when major changes to your baby’s health occur. Leave your cell phone and home phone with your baby’s nurse to be placed in a visible part of your baby’s corner.

5. WASH YOUR HANDS TO SAVE YOUR BABY: Make sure your hands are clean each time you visit. Every nicu has a special place for people to scrub or clean their hands before touching the baby. For smaller and sick babies, it may be advisable to limit how many people touch them especially family members and visitors to prevent infections. An infection can be life threatening to your baby and prolong you baby’s stay in the hospital. So friends and family can visit and be there for you; but they do not all have to touch the baby. In this aspect, you need to be a little selfish and protect your baby.

6. BOND WITH YOUR BABY:

Be your baby’s mother and try to connect as much as you can with your baby.
a. Participate in care of infant: diaper change, feeding, bath, holding, taking your baby’s temperature at least once a day or as often as you can. Always ask your bay’s nurse to make sure it is safe for the baby. For premature and sick babies this may not happen right away and may take days to weeks. But it is a very important way to connect with your baby and should be done as soon as possible.

b. Kangaroo Care is the most important way to bond and connect with your baby. Even a ventilated baby can be held this way with assistance from the medical staff. Ask when you can safely do this. Early Kangaroo care can be done even for babies less than 1 kg; but note that in extremely low birth weight kangaroo and bath on the same day should be avoided to prevent temperature instability and stress on the infant.

c. You should talk to your baby everyday. Hearing your voice is a comfort to them and is your gentle touch is soft and reassuring feeling and different from needle pricks and blood draws and procedures that they undergo during the day. It is ok to sing softly or reading to infant even in isolette.

e. Early breastfeeding once oral feeds can be tolerated is recommended regardless of birth weight. If your baby is too premature or sick to suck; they can get the breast milk through a tube. Breast milk is the best gift you can give your baby in the nicu as it provides them with much needed immunity and protect them from infections. Pump every two to three hours to increase your milk supply. When visiting the nicu, as for a private area to pump when you need to. Increasing you fluid intake can also boost your milk supply.

7. CONSIDER THE NICU YOUR BABY’S HOME FOR NOW:
a.  Bring in clothes, blankets for your baby; and if possible launder some at home and bring in fresh supplies when you can. The nicu will usually provide clothes for the babies over 3 pounds but bringing in my own baby’s freshly laundered clothes sometimes helped to make me feel like a mommy, especially when you are home without the baby.
b.  You can decorate your space a little to make it more warm and cozy. Ask your nurse to make sure that you don’t bring in things that will interfere with care.
c.  Hang family photos or cards, notes, small soft toys, or words of inspiration around the crib or incubator. This helps you feel your baby is surrounded by positive energy and can be uplifting for you too.
d. Bring in a music mobile or small toy; even a bouncer or swing that you received as a gift can be used in the nicu for your baby when appropriate.

8. CELEBRATE SPECIAL MOMENTS:
a. Find a routine or something to celebrate your baby’s special moments or achievements. You can do something special for each pound gained or save the first bottle finished. I would celebrate OlaRose’s birthday each month with a cake. She couldn’t eat it but I would take a picture at the bedside with it after which the nurses and doctors would enjoy the cake. It was fun and silly, but made me feel good.
b. Take pictures of  you and your baby. A lot of parents are so overwhelmed or emotional that they do not remember to take pictures of their babies’ special moments. Picture taking with disposable camera, which can be kept at bedside for nursing use to capture baby’s cute moments and first milestones if you miss them. Even though they are not home, they are achieving milestones which you can capture in memories: first bottle, first time in clothes; first time of oxygen; first time you held your baby; first Christmas, thanksgiving or holidays spent in the nicu

9. ALWAYS CHECK ON YOUR BABY:
a. Visit as often as possible or call every nursing shift or daily to check on baby’s progress and talk to nurse or physician if needed. Sometimes, it may not be possible to visit daily; but do not let any day pass without you at least calling to check on your baby. Just as it would be impossible to forget to pick up your baby from the daycare or forget to check on him during a sleepover; you should make it a point to check on your baby’s well-being daily.
b. If possible tape a digital recorder with your voice or Daddy’s voice or music on it; and kindly ask your nurse to play it for the baby sometimes when you are not there. It is very soothing for the baby to hear your familiar voices and helps them relax. Be sure that the recorder is a small sized one,  is cleaned occasionally, and placed faraway from the baby’s body. OlaRose had one and her nurses would kindly play it for her before or after I visited, and they noted that her oxygen saturations would improve dramatically when she heard my voice. As she got bigger, she soon took to smiling when the tape was played.

10. TAKE CARE OF YOURSELF:
a. Try to get adequate rest before coming in to see your baby so that each visit is worthwhile. Eat well and exercise when you can. You need to be there physically, mentally an emotionally when you visit.
b. Try not to be too emotional or crying when talking to your baby because your emotions are transmitted to the baby and can cause them anxiety. When I cried at my daughter’s bedside coming from my son’s funeral service, she started to desats and her oxygen requirement would go up, so I made a note to always be positive and upbeat around her; so she feels encouraged to know that I believe in her and I am proud of how brave she is being.
d. Do something nice for yourself once in a while. For example, once a week you can go out to dinner with a family or buy something special for your baby or yourself; whatever you do, think happy thoughts about your baby when you are doing it; and do not feel guilty that your baby is in the hospital. When you feel good; your visit with new energy and calm and your baby feels that positive vibe which is good for them.

11. SOCIAL, EMOTIONAL, AND SPIRITUAL SUPPORT SYSTEM:
a. Talk to family members, friends and spiritual counselors about your feelings to avoid depression and emotional breakdown, esp. following loss of infant in the nicu.
b.  Do not turn down help, esp from your parents, siblings, extended family or friends that want to help do things for you; like watch your other kids, grocery shopping, arranging for house cleaning, or cooking or ordering food for you and your family. This gives you time to visit your baby in the nicu or maintain some order or sanity in your lives so you are not too stressed out.
c. Do not go through this experience alone. Join our ObiolaRose TwinAngels Blog and share your experience with other mothers who know how you feel.
d. Keep a NICU journal or diary on admission of the baby to the NICU try to update it often. You can keep track of your baby’s weight, progress, and write down your emotions during NICU experience. It helps each day pass by and gives you something to look forward to. My NICU Baby Journal, available on our website is a very good emotional outlet for you and has helpful clinical information for you.
e. Talk to other parents in the NICU and support each other in between visits to your babies.
f.  Do not visit a very critical baby alone: If you are coming to the NICU to visit when you suspect that your baby is very sick or dying, please do not come alone. Let someone drive you there and be there when you visit with the baby or await news about your baby’s health.
g.  It is ok to cry sometimes. The nicu experience is an emotional rollercoaster, at best, with a lot of ups and downs. While you may expect it, this does not alleviate the pain or anguish of receiving upsetting news or knowing your baby had setbacks at any point: a feeding held; a worrisome x-ray; running more tests to rule out infection, losing weight or not tolerating feeds. Sharing your feelings with someone who cares is very therapeutic.

12. ROLE OF FAMILY:
a. You and your spouse or partner need to go through this experience together. Sometimes you spouse may not want to get attached to the baby in the NICU because he or she is overwhelmed or scared and confused; and you feel alone. Try and talk about your feels and expectations; but let them come to terms with their emotions too. Be supportive as this is a very stressful period for any family. It can result in alienation, separation, divorce, etc if hurt feelings linger or you develop different routines and interests because of this new disruption in your lives. Praying together or talking about your day or your baby’s progress helps bring you closer. You are still a family even if your baby is not there at home. Try and do something together with your spouse every week (just the two of you) so you can stay connected. Encourage your spouse to talk to someone else about his feelings if he has some difficulty talking to you.

b. Grandparents play a very important role in the NICU. Theirs is a double-edged sword: they are sad that their grandchild is sick or in the nicu and they hurt when they see or imagine what their son or daughter is going through. As a grandparent you can be a very strong support for your son or daughter as they go through this experience. Ask how you can help them frequently; visit and help them run errands; or just keep them company in the NICU or at home. If you live faraway a daily or weekly phone call to your child means the world to them. They can vent, cry, complain, laugh, or talk about the progress of your grandchild. Call your grandchild by name and acknowledge that he or she is part of the family. You can send flowers, gifts for mom or baby, food, clothing items, knitted blankets, socks for baby, etc. You know better what you child is going through and how to help them more than anyone. Let your child know you are proud of how they are caring for their baby and that you love them both. Words of encouragement to the new parents go a long way to build their confidence and reassure them.

13. APPRECIATE YOUR NICU STAFF:
You should be courteous and appreciative of the dedicated and tender care the nice staff provide for your baby. Staff should be sensitive of the families’ needs; and families should also be appreciative of the care given to their babies by the nicu staff: doctors, nurses, technicians, therapists, and even housekeeping staff. They are all instruments of God’s love and healing touch and should be seen as surrogate parents helping to nurture babies in their home away from home. Thank yous and little notes of appreciation in the comment boxes go along way to foster pride and re-energize your doctors, nurses, techs, therapists, social workers, etc. Occasional home baked cookies on holidays are very well appreciated; or you can send a thank you gift basket or food basket along with a note on discharge of your baby. NICUs love getting updates on how your baby is progressing at home so growing up pictures or a collage of pictures (if framed) are enjoyed by the staff. Most NICUs will hang them on the walls or poster boards. These also give other parents hope as when they are new to the NICU experience if displayed on the wall.

14. NICU DISCHARGE:
Sometimes, your baby may need to be transferred to another hospital or long term facility for other specialized care; but most babies will be able to go home from the NICU. Being discharged form the NICU can be scary too because you’ve gotten used to the support and routine provided there. So, preparing ahead to receive your baby at home goes a long way to reducing stress, doubts and fears associated with your baby’s homecoming. Knowing when your baby starts to achieve the discharge criteria listed below will give you warning as to when possible discharge is likely to happen. Usually, if there are no complications to care like infections or surgeries, most preemies are ready to come home around their original due date or shortly after.

a.If your baby is being transferred to another facility or hospital for a procedure or further care, or because he or she is taking too long to feed or grow and the insurance will no longer pay for intensive care status; you can inquire from the staff or case manager about paying a visit first to the facility. This helps you become familiar or comfortable with the facility and get to meet the staff that will be taking care of your baby.

b .Discharge criteria for most nicu will include when your baby is:
i.Out of the incubator and maintaining his or her temperature swaddled in an open crib
ii.Can be fully breast or bottle fed
iii.Is breathing effectively without oxygen (if other criteria is reached, some babies will be sent home on oxygen)
iv.Free of significant apnea (stopping to breath for 20 secs) and bradycardias (low heart rates less than 100) {sometimes babies that continue to have less significant apnea and bradycardias will be sent home on an apnea monitor. You NICU staff will help you arrange that}.
v.Gaining adequate weight each day (1/2 to 1 ounce a day)
vi.Weighs close to 4 pounds or about 1700g or more.

c. Getting Ready for the Discharge: Sometimes parents are so busy taking care of the baby in the nicu, that they forget that they have to get the home ready to receive the baby. You may have had the baby early before you could purchase baby supplies and essentials; or before you could have a baby shower where friends and family give you baby gifts.

i) Have your home cleaned and sanitized at least a week or two ahead of time; and give enough time for the carpet to dry. You will feel more comfortable if you baby is coming to a fresh and clean home. Having the air ducts cleaned out is a good idea so the air your baby breathes is free of irritants.

ii) Buy a crib, bathing supplies including thermometer, bottles and feeding essentials (include a nasal aspirator and saline drops to clear a congested nose); clothes (do not buy too many preemie size clothes as you will be amazed at how fast your baby will grow out of them); and get the baby’s room ready ahead of time (allow adequate time for fresh paint to dry before the discharge date).

iii) A car seat is mandatory before discharge and make sure to check the weight specifications for premature babies. Those that start at 4 pounds instead of 5 lbs will be a better fit for your tiny baby; but most car seats will have adjustable head rests.

iv) Buy bulk groceries and house supplies because you may be unable to have time for that for a few days or weeks depending on the demands of your baby. You want to take the time to get to know him or her and make your baby comfortable and familiar with his new home, so unplanned trips to the store etc can be avoided by stocking up.

v) For breastfeeding; you should purchase your own pump and storage containers before your baby comes home. While your baby is in the NICU, the hospital will usually provide a breast pump to be used there. Having a freezer to store breast milk will be useful too.

vi) Make time to learn how to care for your baby while in the nicu. If your baby is going home on oxygen, learn how to connect and use the oxygen equipment, pulse oximeter or apnea monitors. Your nicu nurse should schedule a teaching session for you to learn any special dressing changes; care of central lines (e.g PICC, broviac lines) that you baby will be going home with. Sometimes overnight rooms are available for you to spend a night or more with your baby in the hospital before discharge. It is a great way to get comfortable with your baby but with available support from NICU staff if you need it. So ask about sleepover prior to discharge if you feel the need.

vii) Learn CPR in the hospital or schedule a class for yourself if you every have baby in the NICU regardless of how healthy or sick he or she is. Every parent should know how to administer CPR for it can save your baby’s life. Your NICU routinely offer classes for parents, so ask.

viii) Find out the out patient appointments or follow ups your baby will need and schedule them weeks before discharge. If your baby had been followed for ROP, he will need ophthalmology follow-up. If your baby had any GI or stomach surgeries, he will need a Pediatric follow-up and Pediatric GI appointment. You can search for a list of specialists close to your home and try to co-ordinate appointments in the same area or hospital. Try not to schedule too many appointments in one day because the baby may get tired and usually they will need some recovery time, sometimes days, between appointments especially if it involves some traveling time.

ix) Find a Pediatrician:  Before your baby is born, you should be looking for a pediatrician; especially one comfortable with premature babies or babies with multiple system conditions if you anticipate that you are going to have a baby in the nicu; or you can find a pediatrician while your baby is in the NICU. Always ask for a print out of your baby’s NICU discharge summary to take home because sometimes your pediatrician may not have received a copy before your appointment.

x) Get Connected with NICU Follow-up: Your nicu should also get you connected with the NICU follow-up program closest to you. NICU follow-up is very important to monitor your baby’s neuro-developmental progress and determine if additional services like physical, occupational, or speech therapy is needed. The NICU follow up clinics work closely with Infants and Toddler Early Intervention/Developmental Programs in your community. The infants and toddler program is a free service for all baby’s discharged from the NICU up to 3 yrs of age. They provide the therapy services recommended by the NICU follow-up programs in the comfort of your home and it is wonderful. You are assigned a co-coordinator who visits frequently and gets to know your baby well.

xi) Arrange to have time off from work to care for your baby at home: If you anticipate that it will be a problem to have enough time off during your pregnancy; you could go back to work as soon as possible when the baby is in the NICU and visit your baby when you get off work in the evenings and during the weekends and save the prolonged time off for major unexpected events in the nicu (like surgery or major procedure you would like to be present for) and for when your baby finally comes home. You need at least a month with your baby, if possible, especially if premature to get comfortable with him/her and train any other person that might be helping you with the baby when you return to work. Thus, arrange for a nanny, babysitter or family member to assist you ahead of baby’s discharge and give adequate time to train them to care for baby’s needs.

x) Stock up on hand sanitizers: Feel free to make friends and family sanitize their hands before touching your baby when he or she comes home. This can continue for weeks to months depending on the baby’s health condition and your comfort level. If you feel awkward asking them to do it; simply remember the anguish you will experience if you baby ever got sick soon after leaving the nicu and that friends and family can only send their well –wishes or visit occasionally; but the agonizing day and night watch by the bedside would be your sole responsibility. That will quickly dispense any guilty feelings from your mind. Keeping one’s hands clean and free of germs is safe and good for the baby and no-one should be reluctant to do it if they care about the baby’s well-being. Kindly remind family and friends that the baby is still tender from being premature or being in the nicu; and hand sanitizing was what kept your baby safe in the hospital and is recommended at home too.

15. LOSING A BABY IN THE NICU:
This is a devastating and traumatic experience for any family, even when aware of the possibility ahead of time. It is never easy to come to terms with. Parents hold out hope all the way to the end; and no one should ever try to take that away from a parent. Seeing your baby fighting to stay alive is tough but you being hopeful and telling your baby that you believe in him or her and that you can see how hard he or she is fighting is a way to acknowledge that your baby did his or her best no matter the eventual outcome.

a. AGAIN, Please avoid coming alone to see your very sick or dying baby. You need support from a close family member or spouse/partner; and someone to drive you there and back because you may be too distraught and emotional to drive.

b.If your baby passes away, it is okay to grieve and it is good to hold your baby and say your last goodbyes. Most NICUs may close a curtain around you for privacy or give you a private room to spend time with your baby and family. Some parents take pictures with their baby at this time. It is perfectly fine because sometimes you never get a good look at your baby with all the tubes, lines, and tapes covering him or her; and they can be removed at this time so you can bond with your baby. The baby usually will get a bath shortly and may have lotion applied and dressed up for your to see him or her as beautiful as possible for the last time. The NICU nurse would usually try to get pictures of your baby all dressed up.

c. Ask for spiritual counselor, priest, chaplain, pastor, and rabbi depending on your faith. Having them around to pray over the baby or baptize while baby is critically ill is very comforting. It does not matter how many times you need to do this, if baby survives each episode. It gives you emotional strength and comfort each time. If no spiritual counselor or priest is available anyone can pray over a child and baptize them. If you anticipate being late on getting to your dying baby’s bedside, it is okay to ask a nurse to find someone to pray for or baptize your baby or find a spiritual counselor in your absence.

d. It may be traumatic and painful, but you have to make the decision about what should be done to your baby’s precious body:

(i) An autopsy will be requested as routine from medical staff to find out cause of death but it is your choice. It is equally hard and uncomfortable for the staff to ask you for autopsy at this very private and painful time; so try not to feel offended if they ask. Do not feel guilty about refusing one either because most parents do not want to think of their child’s body being cut in anyway; but in some situations having an autopsy may help give you closure. Whatever you decide, do what you are comfortable with.

 (ii).You will be asked to make decisions about a funeral home to send your baby to or if you want the hospital to take care of (dispose usually by cremation)  your baby’s body. A family member, grandparents or close friend can help you find one in your area. You will have to decide if you want a cremation or full funeral service to intern the body. Even if you decide to cremate; you can still arrange a service for family and friends to pay their last respects. Whatever you decide, do what you feel comfortable with. There is no right or wrong way to do this. Your baby is gone and will live forever in your heart. Burying, cremating, or memorial service is just a way for family and friends to honor his or her brief life and show you their support. This usually may need to take place days after your baby’s passing. Try to let the NICU staff know if you are having a service as some may want to be there to show support and pay their respects to your little one. No matter the age or size of these little angels; they are individuals and human beings and should be seen as such and given the same dignity, respect and love.

e. You can still name your baby: If you did not have time to name your child, it is a good idea to choose a name even after they are dead for the death certificate as a way to always remember them and acknowledge the brief life they lived.

f. It is healthy to grieve. No one can tell you how to grieve because no one can feel the pain of losing your baby the way you feel it. Find healthy ways to remember your baby: a pendant, a picture, a memorial, and a memory box. It helps sometimes to talk about your experience and the time you got to spend with your baby. Sharing your emotions helps prevent depression. After a while, it seems that everyone has forgotten about your baby and there are no more visits to NICU or calls or gifts/well wishes and you may feel alone, empty or alienated; choosing a way to remember your baby helps feel that void.

g. A Memory box is a precious way to remember your baby. Most NICUs will provide that and place all the baby’s belongings, clothes, footprints, pictures in it. You can store this in a special place at home. Sometimes, they will include a few strands of your baby’s hair or mold of hands and feet. Having a part of your baby with you can be very healing in the lonely and painful weeks and months ahead.

h. Remember that you are not alone. At ObiolaRose Twin Angels Foundation we want to celebrate the life of your little angel. Visit our Obiola’s Wings of Life blog to pay tribute to your baby and let us all know how special your baby was and how your life was touched in a most special way by your little angel.

By
Olachi Mezu-Ndubuisi, MD, OD
Neonatal Pediatrician and mother of one pound twin babies, Obiola and OlaRose

Excerpt from Making the NICU a home and safe haven – a manual of neonatal care for parents and staff. © Black Academy Press, Inc; 2009.