Moderator Introduction, by Dr. Sara Ahronheim
October 15 is Pregnancy and Infant Loss Awareness Day, and in fact the whole month of October traditionally is the time to remember children who have died. US President Ronald Reagan proclaimed October Pregnancy and Infant Loss Awareness month, in 1988, and Canada followed suit in 2005.
Each October 15, at 7 pm, the Global Wave of Light traverses the earth with candles being lit in remembrance of all babies who passed away too soon. You are invited to take part in this by lighting a candle in your window, and thus joining hands in support with all those who have lost pregnancies, newborns and infants.
If you or someone you love holds this grief inside your heart, please know that you are not alone. If you need love, support, friendship or a (right now virtual) shoulder to lean on, please reach out. Here at CWIM we would be honoured to help you find the assistance you need.
BY DR. CAROLA COLLINS, MD, CCFP
Dr. Collins is a wife and mom full time. She is also a family doctor with a focused practice in LTC and palliative care in Oxford County, ON.
Trigger warning: Infant loss.
"Carola, he's dying."
I can still hear her voice in my head. The amazing NICU fellow who so often took a moment to give my little man an extra pat. The one who said "William" where everyone else had followed our lead in calling him "Liam." The one who took the time to admire the photos on my phone.
Our story started months before during a rocky pregnancy with hyperemesis, pelvic injury, hypertension and plans to induce at 37-38 weeks because of how awful I felt. Around 32 weeks I started having a recurring nightmare: I arrived at my induction and there was no fetal heart beat. Every night I woke with a start, waited to feel a few kicks and willed myself back to sleep.
I was working when labour started at 34 weeks 5 days. "Dr Collins, I may be partly deaf and mostly blind but I think you're in labour" my last octogenarian patient of the day said. "Haha, I still have a couple weeks to go!" I laughed. I came home and the cramps worsened. I felt something leaking down my legs and told my husband it was time to go. All night I laboured in triage, the OB nurses telling me to be calm and see if the labour would stop. They gave IV hydration and morphine. As my nightmare butted it's ugly horrors into my consciousness, I started nipple stimulation, prayed as I had never prayed before and told my husband "We have to meet this baby now." The next morning he arrived. Beautiful tiny little man. My man. My living baby.
Little Liam was quickly rushed off to the special care nursery with a blood sugar of 0.3. Two days later he ended up in NICU. As we drove there, both my husband and I had a sense this was a bigger deal and my husband said to me "This might be one of those defining moments that make or break us. Either we fight to trust God and stay together or we lose everything." Six days after that, he was diagnosed with gestational alloimmune liver disease--neonatal hemochromatosis.
Things got worse. Liver failure worsened and he was moved to SickKids. He was listed for transplant and we waited. We watched as the ascites worsened, smelled fetor hepaticus on his lips, marvelled as our sweet Liam bronzed before our eyes. Thanksgiving weekend we were told our darling had hours to days left to live as abdominal compartment syndrome shut down his renal function and made him need intubation. "Please Lord, give me more time with him" I prayed. One last ditch effort was offered: a peritoneal drain. As the ascites drained out, we got urine, blessed golden urine and renal function stabilized. Eventually he was able to be extubated and we had a glorious month from the day we were told he was at death's door.
Liam would follow me with his eyes, smile, coo occasionally. In his last week he even drank 10 mL out of a bottle. I stayed close by and cuddled as much as possible. I sang "His eye is on the sparrow" "Be strong in the Lord" and "Jesus Loves Me" daily.
Meanwhile we waited for the unimaginable to happen. For my son to live, another had to die. I struggled to come to terms with that reality. I didn't know how to pray. Would praying for my son to live mean I was praying for another mom to bear my burden of grief? Would not praying for a liver transplant mean I had given up on my beautiful boy? Oh Lord hear, Oh Lord act, Oh Lord help me to trust Your will. Bring glory out of this mess.
The last day is still a bit surreal. We arrived at the hospital and something felt off. He was too peaceful. Labs looked decent except no one had ordered an ammonia. When that came back, I knew in my heart of hearts the battle was coming to an end. A new NICU attending came over and said, "We should talk about code status." "Let me talk to my husband" I said although I already knew what our answer would be. "They're asking if we want chest compressions and defibrillation for Liam, honey." I said over the phone to my husband who had gone down to the chapel. "That's where we're at then?" he asked. "I don't think things are good." I replied. He continued "I've been praying that he won't have to endure too much pain. It seems wrong to pray that and insist on full code. I think if his heart stops, we let him go." "Yeah." I said and turned to the resident: "No chest compressions or defibrillation but can we support his breathing if necessary?" He nodded. Hours passed. He was intubated in preparation for dialysis He started having a pulmonary hemorrhage while getting FFP and platelets. He turned blue. Both of us dashed to his side and said "We love you, Liam. We always will. You may go and be with the Lord." His O2 sats rose as the nurses pushed up the oxygen.
Then came that voice, those words. "Carola, he's dying." confirming what I saw clinically and what my torn heart knew without a doubt. "Does he die on the vent or in your arms?" The answer was perfectly clear.
Several still frames later in my memory, I see my little man in my arms as I lean into my husband's embrace. He briefly opens his eyes and a glimmer of a smile crosses his lips as if to say "I love you." and then his spirit slips away. Into your hands I commend his spirit, Father.
The guttural moan that tore into the room at that moment seemed to come from a foreign creature. It took me by surprise, then fear as I realized it came from me. In that moment I became a bereaved mother. A new identity borne out of deepest pain. In the early days and weeks, I clung to things that helped me remember him. In time, I returned to work and was blindsided by the first patient I saw with fetor hepaticus. I was immediately transported back to the NICU, a creaky rocking chair, a yellow isolation gown and a pair of solemn blue-grey eyes following my every move. Those moments still happen and I thank God for the memories.
Other things happened: my husband and I grew stronger as a couple, our faith became personal and our desire to walk with those in pain and suffering became more focused. We will be seven years out from that dreadful day in just a few more weeks. There is no question that Liam's life changed all of us and his legacy lives on. Glory out of the mess. Prayers answered in ways that we never imagined but ultimately are very good.
Until we meet again, darling boy, I love you and miss you.