Shiloh Faith Bustos was born on October 12, 2020, at Dallas Presbyterian Hospital. The delivery was long and complicated. Shiloh was taken to NICU for a week then transferred to the Special Care unit due to her poor feeding. At the time they said her heart was a little swollen and that she had a heart murmur but that it was not concerning. Finally, on Nov. 4th we get discharged to go home.
Once discharged a couple of weeks later we receive a call that she needed to see a cardiologist for a follow-up appt. and an Echocardiogram (heart sonogram). Shiloh was 5 weeks old at the time. They noticed then that the muscle part of her heart was a bit thicker than her previous echo. They said that they were hoping that it was due to my gestational diabetes and to not be alarmed, to wait and see at the next month’s follow-up appt.
Shiloh was 9 weeks old when we go for the next heart echo and she is then officially diagnosed with a rare congenital heart disease called Hypertrophic Obstructive Cardiomyopathy ( HCOM) and Pulmonary Stenosis. HCOM is a rare heart disease that progressively thickens the heart and it obstructs the oxygenated blood flow to the body. Because it affects the muscle part of the heart, there is no procedure to fix it. HCOM is not common in babies, it’s a genetic disease that normally develops in adulthood. Pulmonary stenosis is the narrowing of the valve that flows the nonoxygenated blood to the lungs. With these two major obstructions and Shiloh’s poor feeding, she was at risk for heart failure. We got admitted to Children’s Hospital in Downtown Dallas to get the proper care and she is put on medication to reduce her elevated heart rate. We got discharged on the heart medication ( beta-blocker) to reduce her heart rate and a Nasogastric Tube (NG) to help Shiloh gain some weight.
While being at home Shiloh isn’t keeping her food or medication down, she is vomiting during and after feeds all day long, is very lethargic and weak.
January 11th we take Shiloh in for her follow-up appt to see if the medication had helped some and it didn’t. Her heart had worsened and she was dehydrated. They admit us again at Children’s Hospital where they are now making sure she is keeping her medication down. They drew blood work and it showed that she is at high risk for heart failure. She is at stage 2 out of 4. We are now getting all the proper care for her and the cardiologist team has been making sure that Shiloh is progressing and that she’s meeting all her daily goals.
We are hoping that the medication and the tube feeding help her gain weight and that her heart rate maintains reduced. She is being monitored and currently, we are waiting for genetics test results to help determine what the cause of this condition is so that the doctors have a better idea of what’s to be expected for her. If the medication isn’t effective and the heart progressively thickens, Shiloh will be listed for a heart transplant.
Eduardo and I are very hopeful that this heart medication will be effective and that she will get stronger as she gains weight.
Please join us in prayer for Shiloh Faith. We believe that God is going to use Shiloh’s testimony to change people’s lives. As God is supernaturally healing Shiloh’s physical heart, He is also transforming people’s hearts through this process.
Thank you all for your thoughts and prayers!
God bless you,
Cynthia and Eduardo Bustos