Clinging to Hope

Aubree Grace. Her first name means "elf-power" or "supernatural power." I especially like that second one, because I honestly believe that she's only hanging on to life right now by supernatural power. The doctors still have no explanation for why she is still alive. Ten weeks ago we were first finding out about her poor broken heart, and facing the decision of whether or not to continue on with the pregnancy. We were told that she wouldn't last more than a couple of days because her situation was so severe. We made the decision to continue the pregnancy and to try to enjoy her life, no matter how short it may be.

But she's held on. She's growing, stretching, moving all the time. Each checkup we have the doctors are amazed that she's still here. Heterotaxy happens in approximately 4:1,000,000 children born, or less than 20 in the US every year. It is pretty rare. Without serious interventions, more than 85% of children with this condition pass away in their first year of life. There are very few places in the US that see enough cases to really treat these kids. From what I have been able to determine from my endless Googling, Boston Children's Hospital seems to be the leader in care for these babies.

The doctors at our local children's hospital are great. But I can't help but feel like we are inconveniencing them by continuing to request care for her. They just don't have a way to treat her here and it seems like their only recommendation is palliative care. I know her chances may be slim, but if we stay in KC she has no chance. I started to feel a desperate need to find someone who would be willing to see her as a baby that needed help, and not a hopeless case to just write off.

So we've started asking for second opinions from other centers that are leaders in pediatric cardiology. The first place we were able to contact was CHOP. The doctor there responded that he would agree with our cardiologist here and he would not be willing to take on her case. He told us it would be better for her to pass away since the challenges she faces in order to survive are too great. That news hit me pretty hard. It's one thing to know she's facing tremendous odds and that passing away is a very likely possibility. It's another to hear someone say that your baby would be better off dead than alive. Someone who is supposed to be the expert in treating these babies. I know it wasn't said maliciously but the words still stung.

Reeling from that, I began to search online for some kind of hope. I couldn't give up at this point. She had passed the magical 24-week mark and I knew that I had to fight for a chance for her as long as she continued to hang on an grow. I came across a group of Heterotaxy families (parents and survivors of Heterotaxy) on Facebook. And that was the point I officially let myself start to have hope for Aubree. There I found families who have faced nearly identical situations with their children. Children that are now past toddler-hood and thriving. I found stories of survivors that are my age, with careers and marriages and children of their own.

With help from the group I was able to get Aubree's information sent off to Boston for another opinion. I've been researching medications that can be given while I am still pregnant to help increase her low heart rate and to help prepare her lungs in-case she is born early. What I have found is there are options available, even though the doctors here told me there were none. The medicines may not be effective for every baby but the studies I read showed nearly 50% chance of improvement, especially in the ventricular heart rate, which is where she has the most difficulty. When the other option is to wait for her to die, why wouldn't we want to give it a shot? It makes me mad that we were not even given the information by the doctors treating us.

So we continue our waiting game. Waiting for 29 weeks to get here so we can get our official transfer to OB care at the children's hospital so she can be delivered there. Waiting on second opinions. Collecting medical studies and journal articles to discuss with the OB (earning my doctorate in Googling!). And making as many memories as we can with her in the meantime.