Love: The Art of Caring for Terminally Ill Babies

anon456, BSN, RN

Baby Cherish arrived at the unit on a Winter afternoon via medical transport in a flat car seat bed belted securely to a gurney that looked way too big for tiny 5-pound little self. We had been preparing for her arrival to the unit well before her birth the day before. As her arrival time approached, we lovingly prepared the family suite to be as welcoming as possible. We set up a bassinet with beautiful bedding, laid out diapers, made sure the recliner had a baby blanket draped over one arm of the chair. This was a different kind of special delivery: baby Cherish has come here to die. We were there to support that process for the family at our pediatric hospice/palliative care unit.

Baby Cherish's parents found out about her severe congenital birth defects early in the pregnancy, and because of their religious beliefs, chose to continue to the pregnancy. They also made the choice that when she was born, they were going to let nature take its course, rather than choose advanced medical interventions.

As baby Cherish was removed from the car seat and placed into her mother's arms, I made it a point to call the baby by her name, to emphasize the specialness of welcoming a new baby into the world, to congratulate the mom on the birth of her third child. I told the mom we would not be taking vital signs, and would only listen to the baby's heart and lungs once per shift. Otherwise, the mom was welcome to make her self at home, and we would respect her privacy and support her and her little family any way we could. When I left the room, Cherish's mom was sitting in the rocking recliner holding her baby against her breast, with an expression of great love on her face, and starting to relax. This was not the NICU. This was a safe space for Cherish's parents to enjoy whatever time they had left with the baby.

As I walked away from Cherish's room, I thought of my friend Nina, who had taught me so much about how to talk to a parent of a baby who has died or is dying. Ten years earlier, before I was a nurse, Nina lost her baby to severe congenital birth defects, too. She lost her at 20 weeks when she chose to have a therapeutic abortion. Nina's baby, whom they nicknamed Wisp early in the pregnancy, was very much planned and wanted. It was Nina and Ben's first baby. They got pregnant easily, announced it right away, and shared the different stages with friends and family. On the day of the big ultrasound when they were to hopefully found out Wisp's gender, they did not post the expected news, or any grainy black and white ultrasound photos as expected. There was just silence. Then I got a call from our mutual friend, saying that they had discovered the baby had severe birth defects that were not compatible with life.

We were not sure what to do or how to help. We quietly left gift packages at their door, left messages that we were there for them. A few days later Nina called me and said they had decided to terminate the pregnancy. Her decision was one of love. She didn't want baby Wisp to suffer, to go through the harsh birth process only to have lung and heart failure and die.

Although I had my own views on women's reproductive rights at the time, being a new mother myself put a new spin on what was before a philosophy more than a reality. Now a mother, I imagined myself in her situation and wondered what I would do. I could not imagine facing the abortion of my own baby, nor could I imagine facing holding my baby while she died in my arms. There was no easy answer, and as I processed my own beliefs, I concluded that there was no right answer, except what was right for each family in each circumstance. And so I supported Nina through the abortion.

Years later, Nina still stamps an angel at the top of their family Christmas cards. Wisp floats above her three siblings who were born after her, and their parents. She is always remembered. I make it a point to refer to her by name whenever the subject comes up. When asked how many children she has, she always answers that she has four. Nina taught me to always call her baby by name. Baby Wisp was wanted, loved, and is still remembered.

As a former pediatric nurse who worked in ICU and stepdown ICU, I have seen my fair share of babies who had severe birth defects, whose parents chose to continue life for as long as possible-- and it is possible to continue life for years, decades. Depending on the outcome, this can be either a gift or curse.

What kind of life is afforded to children who are given the best advanced medical care? In some cases the children become stabilized, stronger, and they know a life filled with love and joy. This is the ideal situation. I have seen little babies who I watched endure trachs, vents, gtubes, and corrective surgeries grow up into children who smile, know their parents and siblings, go to school, and add joy to the world and their families. My own brother was born with Cornelia deLange Syndrome in the late 1970's. We were not sure what to expect, or how long he might live. His six years of life enhanced mine, and taught me a special kind of compassion I would not have otherwise known. His place in our family was important and special.

However, I have also seen babies who remain bed bound their entire lives, whose bodies get bigger but they remain even more helpless than a day-old baby, who are not aware enough to interact at all, whose only facial expressions are painful grimaces, who endure countless bouts of pneumonia, sepsis, surgeries to correct dislocated hips, severe scoliosis, painful spasticity of muscles, seizures, and severely contracted joints. Often the care of such children takes such a toll on families that they experience divorce, siblings are neglected, and the special needs child ends up at a long-term care facility.

It is hard to predict which way a child will turn out when they are an infant first being held in a parent's arms-- when they have to make that very difficult decision to love and let go, or fight with advanced medical technology, or somewhere in-between. When they look to doctors for help in making these decisions, the doctors often shy away from presenting hospice or palliative care as options. They are trained to fix people, not give up and let nature take its course. I think because it's a difficult subject, many doctors are also afraid to lay out the not-so-pretty long-term prognosis for many of these children. And so the non-medical, inexperienced parents are left on their own to decide what would not have even been a decision twenty years ago.

When I was 23 weeks pregnant with my second child, I went into preterm labor, and spent the next precarious weeks and months on strict bedrest and medications to keep her from being born too early. I contemplated what choice I would make if she were born at 23 weeks (no medical interventions), or at 28 weeks (give her a chance at life if all looked good). When she was born at 36 weeks and appeared healthy, I was so relieved. But then things went wrong. At three months old she required a feeding tube. She used it for six years. She required therapy to catch up to age level. She suffered horribly with daily vomiting the first three years of life, had endless medical testing, and finally at age two, the diagnosis of a rare GI condition that she has since outgrown. We thought we had our problems behind us.

Then her knees started to dislocate in 2^nd grade. It turns out has a form of an inherited connective tissue disorder called Ehlers-Danlos Syndrome. She not only has mobility issues (had at the age of 12 has already had two major knee surgeries), but the scarier prospect of vascular system issues as she gets older. We have an appointment with a geneticist next month to find out the severity of her syndrome. And to top it all off, she does not respond as well to pain medications as most people, do. So her procedures are more painful than normal and require the use of a special pain team of doctors to get her through them.

If I had known early in the pregnancy the pain - both emotional and physical-- that she would endure in her lifetime, would I have chosen this kind of life for her? There were times, as I sat holding her through her pain that I could not make better, when she was angry at me for agreeing to the surgeries even though there was no other choice, when she had to ride the special needs bus in her wheelchair for 8 weeks post-op, devastating to a developmentally typical 6^th grade girl-- and the night when I finally broke down and gave her a prescribed Ativan so we could both get some rest, that I wondered if this was all worth it. But then when she's having good days-- which is most days-- I know it was. And, I had no choice in the matter anyway. I did the best I could given the knowledge I had at the time. Which is the case with most parents of special needs babies and children.

It's not fair. It is not fair for a parent to learn of a baby coming, to anticipate a lifetime of joy and love, of "firsts." And then to find out that the baby has devastating problems. I do not envy the position of any parent who has to make a decision on the fate of their child, whether it be to terminate a pregnancy at 20 weeks, or deliver a baby and let them die peacefully, or to choose to give the baby the best shot at life through medical interventions. Or, in my case, to choose to go ahead with the third knee surgery next Summer, because in the long run it will enable my daughter greater mobility and less joint damage down the road. Even if she is angry at me and angry at the world and God for awhile.

As I write this, I think of baby Cherish being held in her mom's arms for their precious time together. I think of baby Wisp being held in her mom's heart forever-- this baby who inspired to her eventually become a doctor and an excellent patient advocate. I think of my own baby girl, nearly a teenager, living a full life of sleepovers, violin practice, and spending way too much time on the internet, even as I hurt for her as she faces a lifetime of surgeries, mobility issues, limitations, and chronic pain.

As a nurse and a mom and a friend, I have learned that no two situations are alike. No two children are alike. No two families are alike. I have to both put aside my own feelings on the matter, and draw on my experiences so I can relate to the patients with true empathy and compassion while they are in my care. I recognize that each of these mothers, in each of the difficult decisions they made, acted out of love. It is my role to meet the patient and family where they are in that moment in time, to make them feel safe, to support them and make their hearts rest easy that they are in good hands. Beyond the medical training, the pharmacology knowledge, technical skills, charting, and coordination of care with other team members, it all comes down to one thing, the very heart of nursing. It comes down to love.

*Note: the names and other identifying details of people in this article have been greatly altered to protect their privacy, and some of these characters are composites of several patients I have had.

Love: The Art of Caring for Terminally Ill Babies

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