Another Set of Eyes

Dr. Marx with Boston Children's Hospital contacted us yesterday. He had received our medical records and reviewed them. While he agreed that her outlook is grim, he wasn't ready to write her off completely like others have been. Right now he sees three HUGE hurdles to overcome:

• Her heart block. He didn't know if it was 2nd or 3rd degree, but the low ventricular heart rate is very concerning. There's no way to effectively pace a heart in utero, so she has to survive to term with a heart rate approximately 1/3rd of what it should be.
• Non-compaction of her heart muscles. Muscle fibers should be dense & compacted. Aubree's are spongy. So her heart simply can not get enough force to pump the blood around like it should because the muscles themselves are weak.
• Ascides/hydrops. Due to her heart not pumping effectively, she's in heart failure. This is causing fluid to build up in her chest and abdomen. There are treatments after she's born, but again it's most threatening now as there's no good treatment in utero.

At this point, it's all up to God and Aubree. There are no treatments we can do to help her right now. The fact that she's made it this far is a complete miracle. Should she made it closer to term to be born (32-36 weeks would be good, closer to 38 would be the ideal), then they could look at some interventions. The first being an external pacemaker to at least get the heart she has pumping at a higher rate. If that works, it would relieve the fluid build-up. But since the muscles themselves are weak there's a good chance this may not work.

An external pacemaker is only good for about 4-6 weeks. At that point a permanent one would need to be implanted and additional modifications made to her heart. Or we could see if she was a candidate for a heart transplant and wait for a completely new heart. Of course transplant brings along it's own set of risks and problems. Even a new heart wouldn't necessarily "fix" her as heterotaxy babies have issues with other organ functions due to the way things are mixed up within the body. Stomach, spleen, bowels, kidneys, and liver are all commonly affected and can't really be diagnosed until after birth.

Saint Louis is the closest facility that is capable of doing a heart transplant and they have an excellent track record. He recommended we seek them out vs. trying to uproot our lives and go to Boston. Dr. Marx also knew our current cardiologist as she had trained with him a few years back, and said that he would be in touch with her to share his opinions.

And so we continue our game of hurrying up and waiting. In two more weeks we officially transfer our care to Children's Mercy and Aubree can be born there. It's the only hospital in the region capable of handling her needs at this point. Today we officially are 27 weeks along. That's 11 more weeks than we were told was even possible. While she continues to defy the odds, always present on my mind is the fact that she could pass away at any moment.

So for now we have a plan for what to do if she comes before 7/29. On 7/29 we will re-work our plans, and it looks like things could change again if she keeps progressing further. Unfortunately those plans also bring along another set of tough decisions that we have to face. At each milestone in development more interventions become available. Advances in medical technology have given us incredible opportunities that also come with serious risks and consequences. And our hearts will be tried as we attempt to make the best decisions for Aubree that we can given the information and resources available to us.

But for now I will continue to enjoy her kicks and rolls. And the way she tries to climb up as high as she can under my ribs, even though it's leaving the top of my belly very bruised and tender.