Bela Girl

In January of 2023 we first heard the word transplant.  I had always hoped it would be much later down the road.  But we had been hearing about signs of failure for awhile, and I suppose it shouldn’t have come as quite a shock as it did.  But when we were finally ready to list her for heart transplant after all the testing and evaluations, her liver testing showed that her liver was also failed possibly beyond repair and she might be looking at needing a dual transplant. It was very devastating news. There are only a handful of successful dual transplants done in the US each year, and it is still relatively new. PCH had never done one, so we were looking at having to go elsewhere for it.  So we decided to transfer over to Stanford medical center for a second opinion.  They also agreed that their initial findings did not look good and she needed to be dual listed.  We started trying to understand what this meant for our family, and decided if we were listing...

I was 22 years old and 16 weeks pregnant with our second baby when we heard devastating news about Bela's anatomy.. she would not be compatible with life. They were sure enough about this that even though my Dr. knew how we would feel about it, he assured me it was okay to consider aborting the pregnancy because in the next few weeks I would spontaneously miscarry her. She had Turner’s syndrome and 99% do not survive in utero to birth. On top of that we were told she had Hypoplastic Left Heart Syndrome, a single ventricle heart, so the two together were not going to be survivable.  So everyday I did the terrible task of doing ‘kick counts’. Everyday I waited to stop feeling her move. Everyday I waited to make the call that it was time to come in and deliver my stillborn baby. But she was still kicking strong at 30 weeks, and so I started going in for twice weekly appointments to monitor her heart rate and movements. Everyone was surprised. It was hard to even know what emotions to ...

  Yesterday morning we went in to get some labs drawn, something she has done hundreds of times in her life, and recently about every week since transplant.  Yesterday's draw was different.  Bela always remembers which arm she used last so she always switches off arms. She pulled out her left arm, which isn't usually her easier arm, because she had just had an IV in her right arm to get some fluids on Thursday.  They tried a couple times but couldn't get her vein. I know it was hurting her because for the first time in a long time, she started to cry.  She tried so hard not to, but she couldn't stop the tears.  The technician apologized and gave her a minute before trying her right arm.  She got it right in that time but Bela just kept crying.  And I mean crying.  I had not seen that in years.  She just kept saying to her, "you've got this, almost done", as if she hadn't been getting labs weekly with no problem for months.  I knew t...