By Louise Eggen
A mother has had such a good pregnancy and is at a doctor’s office for a routine visit. The nurse takes her blood pressure, and next thing you know, mother is told she will be delivering her baby today, even though she is weeks early. Mother has preeclampsia.
Mom has tried to get pregnant and been unsuccessful, so she decides to see a specialist and have fertility treatments. This process is emotionally as well as physically draining, but worth it to have this cherished baby. But then mom and learns that her baby has a fetal anomaly and will need closer observation and likely an ICU stay and maybe even surgery shortly after birth.
A baby is born, and parents are so excited! Suddenly the room fills with staff and baby is whisked to a side isolette because she isn’t breathing; staff works on her and the parents briefly see her as she is being sent to the NICU. Dad leaves to accompany the baby.
Baby has been in the NICU for five months, and no one is even mentioning a discharge date. The parents have become familiar with the sounds of alarms, ventilators, IV beeps, etc. They drive to the hospital to spend time with their son and just can’t make themselves turn in to the parking structure. They drive past, and it takes an hour before they can come to visit.
Dad has heard so much about his son and been given so many updates by nurses, neonatologists, nurse practitioners, and specialists that he can hardly keep it all straight. Everyone has a slightly different way of speaking of what the baby has encountered and of upcoming procedures. It is difficult to discern whether or not his baby is actually making progress.
Having a child in the NICU is a traumatic event, and parents may have difficulty in adjusting. It is not what they considered when making their birth plan; few even factor into their plan the reality that their baby may be born early or sick or have serious health issues. Few think their baby won’t be in the room with mom after delivery. Some families who experience these traumatic events have temporary difficulty in coping. But with time and good self-care, most of them will be able to manage.
As chaplains, we help parents process their feelings, thoughts, worries and concerns about their child in the NICU. We hear about their struggles to manage each day; they can’t afford to look at the big picture. Sometimes they are afraid to even decorate their child’s nursery at home because the child may not come home.
We know that parents have few places to voice these concerns and fears without judgment and with understanding. We need to touch base regularly with parents and ask about how they are doing. We need to encourage them to speak about their baby. They often need our affirmations that their child is growing or gaining weight or looking cute in this new outfit. Parents want to be parents and brag about their child. Sometimes they need space where they don’t have to hear about the issues with their child but just be a parent who can brag, and chaplains can provide these opportunities.
Mercy Hospital-St. Louis has a Neonatal Intensive Care Unit Parent (NICUP) group, run by parents who had a child who spent time in the NICU and want to give back. NICUPs provide an evening meal or breakfast several times a month to encourage current families to get acquainted. While sharing a meal, parents are encouraged to introduce themselves and share their baby’s story. NICUPs facilitate and encourage this sharing by speaking of their own child’s journey. They have a common bond and understand what current parents are saying and experiencing. This is another opportunity for parents to begin feeling hopeful as they hear survival stories and hear how children are thriving years later.
Even when families profess to have no connection to a church, they often claim a spirituality. They see a chaplain and think of us as representing God or a higher power. They may find comfort in our praying with them or offering sacraments. We can help them explore their sources of support and then encourage them to reach out. We work with them to name their strengths and needs.
We are not qualified to diagnose, but we can be good listeners and offer suggestions. We can refer them to other programs at our various hospitals that help parents deal with their stress in the NICU. We can hear parents’ fears and concerns and speak with a medical staffer and ask them to clarify misconceptions. If our relationships with parents are strong, they may even be open to hearing our suggestion that they consider counseling.
Chaplains provide valuable support and presence for families in the neonatal intensive care unit. We acknowledge what a powerful experience it is to have a baby in NICU and work to affirm and support parents throughout their journey.
Louise Eggen, BCC, is a pediatric chaplain at Mercy Hospital in St. Louis.
NICU parents grieve for their lost expectations
By Christy Medina
The neonatal intensive care unit seems calm and somewhat peaceful. The lights are low and the noise is minimal, with occasional beeping from the monitors.
To me, the NICU feels like a smooth ocean with a rip tide at the bottom. Each patient’s family is dealing with their own stress, fear, and grief. The most common story I hear is that the parents did not plan to for their baby to be in NICU, and yet they are now coping with long extended hospitalization. They had everything ready at home — the room, the crib, the baby clothes, extended family visiting, the baby shower, and now this. One mother became teary and emotional as she shared that the only thing she wanted to do was to bring her baby outside to feel the sun. She talked about other family members and friends having babies and bringing them home. “When can I experience the same thing and start my family?” she asked tearfully.
“Your family has already started,” I said. “It just looks different for now.” I affirmed her gifts as a mother, reminding her of her faithfulness and devotion to be with her baby every single day, even when her own body was healing from giving birth. The baby was in NICU for five months, and at times, the father told me he felt defeated and helpless. I accompanied these parents during their baby’s hospitalization, providing them with prayers, friendship, hospitality and silent presence when needed. I even baptized their baby upon admission, due to its critical diagnosis.
Like many parents, they grieved for “the what should have been, and the could have been.” The new life that they have dreamt of is now fighting for his or her life. But however it happens, the parents find strength and courage to fight along with their baby. And the calmness of the water is once again restored.
Christy Medina is a NICU chaplain at Children’s Healthcare of Atlanta at Scottish Rite.
