While in the NICU/Hospital – What Medical Providers Need to Know (Part II)

Part I

Watching Isabella in the NICU, less than four hours before she died

While looking up information for this post, I found a Marchof Dimes study looking at newborns and specialty care nursery admissions (Level II – NINT and Level III – NICU). This study was conducted in 2009-2010 and looked at the 183,030 babies born during that time in National Perinatal Information Center/Quality Analytic Services (NPIC/QAS) hospitals. Of all these infants, “14.4% were admitted to a special care nursery… More than 90% of infants less than 34 weeks were admitted compared to almost half of late term (34-36 weeks, 48.8%) infants. More than 1 in 10 infants born at 37-38 weeks and more than 1 in 13 infants born at 39-41 weeks were admitted. Among post-term (42+ weeks) infants, 13.6% spent time in a special care nursery.”

While I certainly knew babies occasionally spent time in NICUs, I had no idea that the number was as high as 14.4%. I still tend to think of only premature babies as needing time extra care, even though Isabella was born at 38 weeks and was in the NICU. The study details the top diagnoses by gestational ages. The most common for all ages are preterm (23.6%) and respiratory distress syndrome (11.9%).

The amount of time spent in these specialty care units varies by gestational age, “ranging from 4.9 days among infants born at 39-41 weeks to 46.2 days among infants < 32 weeks.” Given the number of families who will spend some amount of time with one or more children in a hospital unit, it’s important for medical providers to know what helps/does not help parents.

Additionally, since NICU stays are immediately following birth, the mother will likely be in the hospital for at least part of the time. I had a C-section and spent four days in the hospital. There are further things to keep in mind when a mother is in the hospital but separated from her child. Here are some items I've gleaned from my and others' experience that medical providers need to know in these situations.

• If our child is either stillborn or immediately admitted to the NICU, do not put us on the mothers and babies floor. Hearing crying babies and watching families cuddling their healthy newborns tears out our hearts.
• Don’t forget we just had a baby.
• Give us typical post-partum care, especially if we are in a different unit.
• Have a post-partum specific nurse check on the mother at least once a shift. The maternal mortality rate in America is atrocious and 700-900 women in the United States die annually as a result of pregnancy or childbirth. This does not include the 65,000 mothers who need additional lifesaving interventions. Make sure to have nurses who specialize in post-partum care look in on the mother.
• If the mother is pumping, have a lactation specialist come regularly.
• Refer to us as parents, because we are.
• Someone recently told me, “You must be Isabella’s mother.” I never hear that and it is such a gift. When we visit our child in the NICU or when we are checked on, recognize us as his or her parent. At the same time, read body language in case this is challenging for some parents to hear.
• Be cautious offering “congratulations.” Each time I was told, “congratulations” on our birth while Isabella was in the NICU, part of me cringed. Yes, having a child should be a joyous event, yet her birth was nothing like we expected and accepting the well-wishes was difficult.
• Even if we are smart and well-educated, assume we know nothing about medicine.
• My husband and I both have advanced degrees, yet we are not medical professionals and medical terminology means virtually nothing to us.  
• Even if one person in the couple is a nurse or doctor, assume nothing, especially if they do not practice in the areas of perinatal or neonatal medicine.
• My brother-in-law is a skilled radiation oncologist, yet he has no idea the typical bilirubin range for newborns. Their daughter’s was atypical, but neither of them had the knowledge to interpret the numbers they were told.
• If one member of the couple is a medical professional, still use language that makes sense to the other person. In order to ensure both parents have adequate medical understanding of their child’s situation, speak in a way that gives the non-medical partner sufficient information. It will be easier for the parents to discuss their child’s health together if they both have heard the same details and can consider the implications.
• Explain ALL numbers and acronyms.
• For example, we were told Isabella had metabolic acidosis and a blood pH of 6.7. The neonatologist then said that the ideal is closer to 7.2.
• To us, this sounded close. We did not realize the implications of 6.7.
• Instead, explain that anything below 7.0 is critical and may cause organ damage.
• Use simple and medically accurate language.
• “Your daughter is very sick.” Additional details are laid on the foundation that our child is sick. Especially when our brains are scrambling to understand a medical crisis involving our child, it is easier for us to begin to grasp the situation when we have a familiar starting point. Then go on and explain the medical factors that have caused this. 
• “When we talk about a ‘stressor’ that caused an ‘event,’ this is not an emotional stressor. You did not cause your child emotional stress that led to this condition.” When we were told that a “stressor” caused Isabella to release meconium, we both thought that this was an emotional stressor. For a while, we thought we had done something to cause the damage that killed our child.
• “She has DIC. This stands for… it implies…”
• Repeat and rephrase information.
• “Your daughter is very sick. Her organs are starting to shut down because they are not able to receive oxygen. Because she cannot take in oxygen, her organs are beginning to fail. Organ failure results in…”
• Even if you tell us something once, do not assume we heard the information well enough to process and make sense of it. Nothing about having a child in the NICU makes sense and we will need the same information multiple times (even though we are intelligent people who generally catch on quickly).
• Recap every time we talk.
• Assume I remember very little of what I was told last time. Even if I do remember something, I may have misinterpreted what you said. Therefore, remind me of what we recently discussed.
• “When we last spoke, your daughter was…”
• Tell us the most critical information first (and recap and rephrase).
• The neonatologist told us that Isabella had metabolic acidosis, hypoxia, pulmonary hypertension, and DIC.
• We thought DIC was the least of our worries because the implications of DIC were never explained to us by the medical team. We later learned that when someone has DIC, it means their entire body is shutting down and they are in critical condition. We had no idea.
• Give both optimistic and pessimistic outcomes.
• Yes, this is a litigious world, but you can phrase it so we have the needed information.
• “Your child is very sick. We don’t know if she will survive and some children as sick as she is don’t live. Many children do make it and live fairly normal lives. We don’t know what will happen to her, but we are doing everything we can.”
• If the situation is dire, encourage families to spend time with their child.
• Again, “Your child is very sick. Sometimes children this sick do not survive, although most children do go home. Since we do not know her story yet, you may want to spend some time with her in the NICU.”
• We were told by the doctors that Isabella would likely be in the NICU for three to four weeks. As a result, we took other friends’ advice and did not wear ourselves out early.
• Had we known she may only live a short time, we would have spent more time watching her, soaking up her presence, and memorizing her features. We had no clue her situation was that dire.
• When our child is in the NCIU, give us something to do to feel useful.
• Having a child in the NICU is one of the most helpless experiences for any parent. There is nothing I can do to influence the outcome of the situation and no care I can provide.
• One of the nurses told me to put a nursing pad in my bra. They would then place this next to her so she could smell me. It was not much, but I clung to this little thing I could do for my child. The beautiful thing about this was it took minimal extra energy on my part but could make a difference. 
• If I can read to my child, let me and have some books available. Unless talking to my child will actively hurt her, let me talk to her or sing to her. Even if she cannot hear me, it makes me feel like I am doing something.
• Some parents will not have the extra bandwidth to do anything except survive each moment, but make it available to them in case they do. 
• If I can touch my child, let me.
• Again, unless it will actively hurt my child, let us touch our baby. The day Isabella was born, I was allowed to once gently rest my hand on her foot. This is the only time I ever touched my daughter while she was alive.  
• If there is a good chance the child will die, let the parents touch their child.
• You can set boundaries (no stroking or rubbing the skin).
• Again, we feel absolutely helpless and our arms ache to hold our baby. We knew we could not hold her, but even having one finger touching her skin helped us just a little.
• As a medical provider, if you have a family member or close friend that is sick and does not realize the severity, seriously consider gently telling them.
• The two physicians in our family knew Isabella would likely die when they heard “DIC.”
• Do not assume that someone has told your loved one the severity of the situation. While we knew Isabella was ill, it was never clearly laid out for us by anyone that Isabella was more likely to die than to live. And that it each moment could be her last.  
• By giving close friends or family members additional information, they have the opportunity to make more informed decisions.

• Thank you for being in a career that provides such love and care to families and babies, even knowing your hearts will repeatedly break. We are forever grateful for the medical providers we met and are amazed by your compassion, knowledge, empathy, and strength. 

Part III