Throughout the time that we were learning about our baby's struggles, my Gramma was also struggling and clearly at the end of her life. We'd told her early on about my pregnancy and my dear Gramma, with all the babies she'd seen in her life, was thrilled for this baby too. He would be her 20th great-grandchild but it seemed certain that she would go before he came.
One of the first things I did when we found out that there might be something wrong with the baby was look for names. I wanted to name the baby for both of my grandmothers and I wanted my Gramma to know that before she died. Sitting up late one night searching baby name sites on the internet, I found the name Meira (May-EAR-ah) was Hebrew for Helen and Margaret. Here was a name to honour my maternal grandmother, Margaret Irma, who died in October 1990, and my paternal grandmother, Edna Helen. Finding out that the baby was a boy was just a bit funny. Really, Husband, you would think you could offer up an X chromosome once in four tries! :) The baby's middle name became Meir and Chris chose the first name Samuel.
We told my Gramma the name, and also that there were some concerns about our baby. She said only that God would take care of it, that God would decide. I have held to that many times. On October 8, I went to the hospital where my aunts and uncles and cousins were sitting with her in various rotations. I watched my dad and his brother gently dab her lips with water and vaseline and hoped that I would raise such kind and empathetic men. I shared tears with my mom and my aunts as we watched our beautiful mum and gramma sleeping painlessly but with laboured breath. She died in the early hours of October 9 at the age of 95. She was more than ready to leave this earth, to go to the parents, siblings, husband and baby who had gone before her. The void was ours; she was at peace.
I could see how everything that was happening was weighing on my parents, and especially my dad. As my wise Zachary pointed out when his Great-Gramma died, "I know everyone is sad but Boppa must be the saddest. That was his MOM. He had her for his whole entire life." My Gramma was an incredibly special woman, revered in our family, loved, respected and well-cared for by her children. At her funeral, they acknowledged that she had six children, including her baby girl who died. That baby was born 75 years ago and lived only two days but she was still real; it made me think how your babies are your babies always and forever, no matter what. I held my Samuel Meir, my fourth son, tight in my belly.
My grief was getting all mixed up. I was sad to lose my Gramma, sad to see my dad hurting, sad for my own family and for the wee baby who I loved and wanted but who I didn't think I would get to know. People told me not to lose hope, to pray and we would be granted a miracle, to stay positive. I wanted to do that but I wasn't good at it. Every time I let myself hope, there would be another piece of information that blew that hope to bits. That was the most painful feeling of all, to rise into hope and then plummet. What kind of mother was I if I gave up hope? And yet, if he wasn't meant to be here, didn't I need to be able to let him go? As with my dear Gramma, it was a selfish hope that would want her to stay in this world where she was no longer meant to be, where she was suffering. There was love in our good-bye to her. I was dancing with my grief and my hope, learning about peace and surrender.
This dance was powered by another series of tests now that our baby was big enough to see more of what was happening for him. At the beginning of October, we had a thorough fetal morphology ultrasound. Daniel, Zachary, and my mom came into the room with us - their chance to meet baby Samuel. Jakey had been to an ultrasound with me a couple of weeks before. They stayed for a while and were actually more interested than I even thought they would be. They could make out his little face and limbs and were fascinated by his movements and heart beat. The ultrasound technician got a photo of Samuel with his hand up to his face; she printed a copy for each boy and attached a sticker, told them it was a picture of their baby brother picking his nose. We had a good laugh at that and the picture remains on our 'fridge.
The boys left with my parents to pick up Jakey from preschool and Chris and I had some time alone with Samuel and our lovely sonographer, Alison. My heart soared to see my baby. He appeared perfect in every way - so long as we ignored the heart squished up next to the stomach and the lack of visible lung development. My tears were delight and grief together. The last thing she needed on her checklist was to see him open and close his hand. Anyone who has ever pried open a newborn's little fist knows that they don't actually open and close their hands a lot. So we waited, watching him, and eventually he opened his hand and closed it over his "boy bits." We laughed again and Alison and I turned to Chris, "What IS it with you boys?!" I implored Samuel to leave the bits alone and prioritize growing himself a lung or two.
We waited for the Perinatologist to come and talk to us. It was Dr. Simrose that day and she explained that the heart looked strong and they could see that the kidneys were normal. This was good news, as good news went. I asked her that day if we could donate his organs if he died, that we wanted his little life to be meaningful to someone, to feel like he made a difference. I could barely get the words out before I started to cry. She teared up too and explained that his organs would be too hypoxic by the time he died, but that his life was already meaningful, that it had changed us forever, and that we might not even know how meaningful for months or years. This was true. And comforting. I surrendered a little more.
The following week, Samuel had an echocardiogram. I laid still and quiet for nearly an hour while a specially trained sonographer did a very detailed ultrasound of his heart. I feared that we would find something terribly wrong with Samuel's heart, at which point he would likely be considered palliative at birth. Then I felt my Gramma there in the dimly-lit little room with us and I sensed her telling me, "his heart is strong... his heart is strong." I felt her with us for about 20 minutes and was deeply comforted to think that she was watching over our baby. When the sonographer left the room, Chris leaned over and said, "your Gramma was here. She said the baby's heart is strong." I said, "I know."
The Cardiologist came in a few minutes later, having reviewed the films from the echocardiogram. She told us that the baby's heart was strong, squished over to the right side of the chest, yes, but structurally and functionally perfect. This was the last of the possible co-morbid anomalies for CDH. His chromosomes, kidneys and heart were all fine. He was officially an "isolated CDH" meaning that his only issue was the diaphragmatic hernia. There was still the MRI in a couple of days but the Perinatologist we saw that day, Dr. Connor, told us this was a more favourable outcome for CDH than we might have thought before.
Our hearts soared with hope that day. We came home to my parents, who had been watching the boys, and told them there was good news. We told our children that there was a chance that Samuel would live, that he would have some difficulties with breathing and development but that they may be getting a baby brother after all. Going into the MRI later that week, my stress was of the procedure rather than the outcome. As I checked into the Children's Hospital where fetal MRI's are done, I saw all those sick children who have tests like MRI's done all the time and I told myself to suck it up. Aside from being noisy, the MRI was no big deal. We went home that day to focus on planning Gramma's memorial service, knowing that the results were still a week away.
On October 21, we met again with Dr. Pollard from Perinatology and Dr. Brindle from Surgery to review the combined results of the ultrasound, echocardiogram, and MRI. What they had to say was the most devastating news since we'd been given the original diagnosis two months before. The hope we'd been given the previous week was based on the fact that the heart was good but it didn't take into account the full picture for our baby. The most damning information was twofold:
a) The MRI showed a lung on the right side of the chest with an estimated fetal lung volume of 22.5%. Anything under 35% was considered to be in the most severe range of outcomes for CDH. There was recently a baby with 30% who survived and went home after a year in hospital but no literature for babies below that surviving. There was no visible lung on the left side of the chest where the stomach and intestines were developing.
b) The left lobe of the liver was seen up in the chest, indicating that the lung would have even less space to grow and that the hole in the diaphragm was large. The repair surgery would be extensive and complex, even more so because of the compromised development in blood vessels to these important organs.
Since babies do not use their lungs in utero, Samuel would be okay up until then unless the heart became too stressed from having inadequate space to grow and inadequate lung to pump to. He wouldn't be able to breathe when he was born and may not even have enough lung to be resuscitated. The doctors were reluctant to offer numbers but agreed on 50-80% that our baby would die in the first 72 hours after birth and, if he lived to be strong enough to go to surgery at all, had a 50% chance of surviving that procedure.
Chris and I just sat there and stared at them. We thought we were receiving good news last week. The doctors were patient, compassionate, knowledgeable - and also willing to say that they were making predictions based on experience and literature and the information for our specific situation, but that they can be wrong and every baby is different. The hope we had the week before collapsed. I felt like I was floating. My heart ached.
Chris and I cried and walked together after the appointment. That night, we went out for tea while my parents put the kids to bed. We had to make a decision by morning about continuing this pregnancy or not. I was scared beyond anything I had ever felt. Chris told me that he has had a very hard life and now he has a very beautiful life and he was not going to let anything happen to his family, that he is a strong person and will take care of us. Samuel was a member of our family and we loved him. He was not suffering. He had a chance. More surrender. We told ourselves that there would be peace and meaning in whatever God offered to us in this journey.
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