I started medical school three months pregnant with my second child. Within two months, at 24 weeks and 5 days’ gestation, my membranes ruptured and I went into labour. A decision had to be made quickly about whether to proceed with a classical Caesarean section, potentially compromising my future ability to carry to term, and be aggressive with the medical care in an attempt to save our infant who, we were told, only had a 30% chance of survival. My husband and I reasoned we had this baby now, so we asked that aggressive measures be taken. Within the hour, our little Josiah was born – all 750 g of him.
By day 2, he was experiencing seizures, required blood trans- fusions, and his head ultrasound revealed Grade 3 and 4 hemor- rhages. We were advised to take him off the ventilator. Our questions of what his future would hold were met with unclear answers. Without a clear understanding of his future quality of life, we prayed God would heal and help him, hoped for the best and decided to let Josiah continue to fight.
The next five weeks were a roller coaster of emotions that car- ried us through countless blood, platelet and plasma transfusions, a laparotomy and a bowel resection. Emotionally, mentally and physically, the stress is draining for parents who are constantly on edge, wondering if the phone ringing will bring more bad news.
A few days following his surgery, we were again asked to extubate him. He appeared to be recovering well, but the subsequent head ultrasound appeared worse. This can be extremely confusing for parents. Our child evidently was a fighter, the physicians willingly performed the surgery, but then they ask you to let him die.
As someone in medicine, I had some comprehension of his medical status. I was shown the ultrasound images, given the daily bloodwork results and believed I was part of his management team. I understood their rationale for asking us to extubate because his future quality of life would be poor. What the physicians failed to understand is that they were trying to appeal to my rational side, but for those five weeks I was Josiah’s mother, still hoping to bring him home one day. To wear both hats at the same time is impos- sible. We decided to fight alongside him.
Over that next few days, he quickly deteriorated. We were told, “He’s dying. There is nothing more we can do.” We knew our son well by then and saw he was tired. The deliberation between my husband and I was short and we elected to take him off the ventilator. We were a family now – father, mother and dying child. No incubators, masks, or lines separated us any longer. I held his tiny frame, which should still be in utero, against me. Within 45 min, our beautiful son died peacefully in my arms, in warmth and surrounded by love.
His death overturned our lives. There was a void of unmet love and unfulfilled moments that trailed us like a shadow. Five years later, we continue to miss him, but much of our healing came from knowing we fought along with him, and in the end, respected his wishes; we also spent our last moments together, instead of watch- ing him go lifeless through an unfeeling plastic incubator. Our decision to not extubate him earlier was irrational to others, but I live without regret. Because I had some medical knowledge and was the only consistent person by his side since his birth, I believed I was able to better advocate for him, and that my voice and opin- ions were ultimately respected.
From this ordeal, I have gained the following insights:
- Communicate with parents on a daily basis, even by phone, so the parents truly understand and stay abreast of the developments and gravity of their child’s conditions. If possible, have the information relayed by the same person so a trusting alliance can be formed.
- When approaching a parent about palliation or a do-not- resuscitate order, do it in a comfortable, nonthreatening environment, with only a few key people, including the child’s primary nurse, if available. For us, there were four residents and physicians with my husband and I in an interview room. There is a need for privacy, but I felt unprepared for so many people arguing their point of view for palliation and became defensive. To me, it gave the impression we were no longer a cohesive team.
- When relaying why you feel a do-not-resuscitate order/end-of- life procedure should be enacted, use clear, basic language to allow parents to make a fully informed decision. If you know the child will have a short lifespan, tell them you would rather their child die with love rather than having their chest compressed. Parents will latch on to even a small, unrealistic hope, if one is inadvertently offered.
- Let the parents know you are also there to advocate for their child, just as they are. Together, you are a team. Give your opinion. Making the parents feel as if they have to make this decision on their own will only push them to resist the idea of palliation for fear it is the wrong choice.
- If the parents do decide to remove the life support, allow them time to be alone with their child. Ask all relatives to leave for even a short period of time to allow the parents to grieve in private. Parents often do not have the strength to do this by themselves. As the physician, come in and ask to hold their child. By cradling their child, as they had, demonstrates they were someone you valued and cared for as well. If you feel like crying, shed a tear with the parents. The positive impact this has on the parents is tremendous and will help them heal. If time permits and the parents ask, attend the funeral.
- If the parents reject palliation, respect their decision, but encourage them to spend as much time as possible with their child, so they will know when their child is deteriorating. If that time comes, ask them to respect their child’s wishes. This is often not something that needs to be done immediately, but it is important to start the dialogue. Unless the parents come ready to start palliation, ask them to go home to discuss it together and then come back with questions.
Above all, remember this is a decision the parents have to always live with. Having to bury your child tortures your soul. If the parents feel pressured into the decision, even if unintention- ally, it will have a lifelong negative impact from which they may never fully recover.
Acknowledgements: I thank Dr Hilary Whyte and Ms Lori Ives-Baine for their invaluable input and support as well as my spouse, Dale Lynch, for fighting along with me.
￼Personal reflections on end-of-life care in a newborn infant
Michelle Ryan MD PGY1
￼￼￼University of Toronto, Toronto, Ontario
Correspondence: Dr Michelle Ryan, Alberta Children’s Hospital, Pediatric Medical Education Program, 2888 Shaganappi Trail Northwest, Calgary,
Alberta T3B 6A8. Telephone 647-881-0388, e-mail michelle.ryan3@albertahealthservices Accepted for publication January 26, 2012