Donation for Leah Grace

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About Leah Grace's Heart Condition

Keep up to date with Leah's progress on her website.

We found out early on in Leah's life that she has a serious heart condition called Left Ventricular Non-Compaction/Cardiomyopathy. Because of her condition, her left ventricle is very hard, which means that the rest of her heart has to work really hard to pump blood to her body. For the first two years of her life, Leah's heart doctor monitored her condition closely, and we waited to see what would happen. Since her condition was discovered, her left atrium has slowly grown, and it has now grown to be 3 times the size that it should be; there is a lot of pressure in there because it is pumping into a left ventricle that is very hard. In addition to her enlarged left atrium, her condition is also causing serious pressure buildup in the rest of her heart, and pressure has backed up into her lungs.

Back in February of 2010 we took Leah to Children's Medical Center in Dallas; we were told that their heart center was one of the top pediatric centers in the state. The cardiologist we saw was concerned with the pressures he saw in Leah's heart via the echocardiogram (ultrasound), and Leah was admitted into the hospital that weekend for further tests. On the following Monday (2/21/2010), doctors did a heart catheterization and decided that the pressures in Leah's heart were elevated to the point that she is in need of a life-saving heart transplant. She was sent home from the hospital at the first of March as a "Status 1b" transplant patient because her heart condition was causing her to not gain weight, or as they put it "failing to thrive".

Since March 2010 we have been waiting for a heart. As you can imagine, there's a lot of information that we have had to process about what is involved in a heart transplant, which I won't go into detail about here. However, I do want to give some specifics about our day-to-day life while we're waiting for the transplant so that you can know how to better pray for us.

The biggest practical aspect of our wait is that the surgery needs to take place as soon as possible after a heart becomes available. We have a beeper that can go off at any time, and when the call comes, we will head to Dallas for the surgery. This also means that we have to stay within two hours of Dallas (thankfully we live less than two hours away from Dallas or we would have to temporarily move).

Another practical part of our day-to-day life is that we have to be diligent in keeping Leah healthy. We must do this for two reasons. The first reason we have to be so careful is that many kinds of sickness are such that if she has them when a heart becomes available, she won't be able to have the transplant, since during the transplant she will be given medication to shut down her immune system so that her body won't reject the new heart. The second reason is because her heart has to work so hard right now, she has a more difficult time getting over sickness than most kids.

Another big part of our day is medicine! Leah is on several medicines right now - she has two for her heart, one of which she has to take every 6 hours (including 1:00 am).

Thankfully Leah's weight has improved since coming home from the hospital in March of 2010. She initially had an NG tube and was on an appetite enhancing medicine, but we were able to take the NG tube out in May, yet are still on the appetite medicine. Because she is still having a hard time gaining and maintaining her weight, she continues to be a "Status 1b" transplant patient. There is no way to know how long our wait is going to be but with her being on the 1b list and with almost a year of time accrued, I think it is safe to say that 2011 will most likely hold lots of time spent in the hospital . (Our doctor said that most of the status 1b kids have to wait between 9 months to a year and a half). We're so glad that Leah's doing well, but the scary part is that her heart condition is so fragile that she could take a turn for the worst overnight. We do our best to not worry, instead being thankful to God for each good day.

Leah was going in for check-ups and ultrasounds on her heart every two weeks, but her recent "stability" only requires her to go to Dallas on a monthly basis. The transplant team is pleased with how well Leah's heart is doing - it is functioning very well in light of her condition. So right now it's a waiting game. It's likely that we'll still be waiting for some time, but it's possible that it will be tomorrow.

We covet your prayers as we wait for Leah's transplant. As big of a deal as the transplant will be, it will be the beginning of a life-long process for Leah of living with a transplanted organ. For the rest of her life, Leah will be on medication that will enable her body to accept her new transplanted heart. Additionally, the rest of her life will include yearly heart biopsies. We believe that if the Lord chooses, he can heal Leah's heart completely, and this is what we're praying for. But if God chooses to allow us to go through this, we are praying for strength for all of us, especially our sweet little girl