Yesterday G and I headed off to Poppy's peadiatric Cardiologist. He rang us a few days after Poppy died and offered to talk through with us what he thought happened, so we thought we'd have a chat. I was more nervous than I've been for a long time, since I am terrified that it was my fault she got sick...but anyway, on with the story.
Dr L was at Poppy's birth, and we'd met him a few time prior to her birth for consults on management. And he remembered most of what we told him. He talked us through everything that had happened since bubs was diagnosed at 29 weeks with the Foetal Heart Block, and why each decision was made. He outlined what normally happens in FHB cases, although again outlined how rare they are. Dr L said they only see maybe 1-3 each year in Victoria, and management in each is slightly different but usually babies survive. He said Poppy was rare in a number of ways. Firstly, she showed no signs of distress we would normally see prior to complete heart failure. No hydrops (swelling), or poor growth. She was above average birth weight for her gestation. Secondly, Poppy's heart block seemed to progress differently to most. Her heart should have had normal function and rhythm in the top part, since we knew the bottom was compromised. But her heart began showing poor rhythm in the top and on the day she was born, everything was compromised; the four chambers, the heart muscle itself, everything. Complete foetal heart failure. Which Dr L assures us doesn't normally just happen over night. But she gave us no warning. Which was why we were too late. He also says he has NEVER seen this happen before, so fast.
He answered the question we were too afraid to ask. Would she have made it if we'd delivered earlier? "It is possible," he says, "I know that's not easy to hear." And it's not. But who knew? The best of the best doctors were on the case, and no one predicted this would happen. So we ask the only question we really want answered. "Why?"
Dr L talks to us again about what can cause FHB. The two causes are either maternal antibodies which attack the electrical circuitry in the babies heart, or structural heart defects, neither of which Poppy appeared to have. He says we'll need to wait on the results of the autopsy to ensure there are no structural defects, although he's pretty sure there weren't. Dr L suspects that I may have one of the rarer antibodies which weren't tested for, and I should go to an Immunologist to get it checked out. He explains that he believes the antibodies must have continued to attack Poppy's heart until they had affected so much of it that it just couldn't beat. He assures us that if there was any function left in it, the pace maker they fitted at birth would have worked.
Our last question, the one were pinned all our hopes on. Risks to future babies? If it is maternal antibody related we have a 30-50% chance of having another baby get the same condition. Without the antibodies, 15-30% chance. So were back to odds again. 15% chance of another ectopic pregnancy. up to 40% chance of early miscarriage. And now a 1:3 chance our baby would have a heart defect...
Dr L says if we choose to have another baby I will need to be monitored weekly/fortnightly from 16 weeks to watch for signs of FHB developing. He says they can manage it better if they catch it early. There are steroids I can take that might slow it down or ever stop it. I can have a dialysis type thing which will wash my blood and take out the antibodies. "Most babies with this condition do well. They don't die. If we are on top of it right from the start, and we can slow it down."
G and I leave feeling like we are armed with a lot of new information. It takes me until we are sitting in the cafe downstairs to realise that I killed my baby. My body killed my baby. How can I be selfish enough to want another child? G is shattered too. "It's a big risk..." he says. I can't imagine our lives without another child. Having Poppy stiffened, rather than shattered, my resolve. I NEED another baby. I can't live with the empty nursery, the pram that's never been used, the rocker I bought just for her, in my house if I'm not going to have another baby. But am I that selfish? "No, it's not selfish," G says, "it's courageous and brave."
Having another baby is what keeps me going. I will always be the mum of two, but parenting one, without another baby. So we decide we'll keep our options open. A new baby might have the same condition as Poppy, but not her sentence. We are fore warned, and that is fore armed.
The question is, am I brave enough?