Help us save Shiloh’s Heart ❤️

Shiloh Faith Bustos was born on October 12, 2020 at Dallas Presbyterian Hospital. The delivery was long and complicated and resulted in an emergency c-section. Shiloh was taken to the NICU for a week then transferred to Special Care unit due to her poor feedings and doctors needing more answers to certain things that were in question. 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 (24 days later) Shiloh got discharged.

Once discharged a couple weeks later Eduardo and Cynthia received a call that she needed to see a cardiologist for a follow up appt. and needed an Echocardiogram (heart sonogram) to look further into her heart. 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 mom’s gestational diabetes and to not be alarmed , to wait and see at the next months follow up appt.

Shiloh went back for her echo at 9weeks old....she was 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 non oxygenated blood to the lungs. With these two major obstructions and Shiloh’s poor feedings she is at a very high risk for heart failure. She was immediately admitted to Children’s Hospital in Downtown Dallas to get the proper care and was put on medication to reduce her elevated heart rate. While she sleeps, her heart rate tends to slow down...which also puts her at risk for SIDS (very scary, which means mom barely sleeps anymore)... They got discharged on the heart medication ( beta blocker) to reduce her heart rate and a Nasogastric Tube (NG) to help Shiloh gain some weight. (She was still around 7.5-8lbs at 2 months old.) 

While being at home Shiloh was having a hard time keeping her food or medication down, she projectile vomits during and after feeds all day long, and is very lethargic and weak.

January 11th mom and dad take Shiloh in for her follow up appt to see if the medication had helped some and unfortunately it didn’t. Her heart had worsened and she was dehydrated(which is the LAST thing a heart baby should be). They admit her 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 . Baby Shiloh is 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. Her main doctor now is a heart failure specialist and she is monitoring Shiloh very closely. 

We are hoping that the medication and the tube feeding help with her weight gain so she can become stronger and so her heart rate maintains reduced. She is being closely monitored and they are currently 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 future. If the medication isn’t effective and the heart progressively thickens, Shiloh will be listed for a heart transplant.

Mom has made the decision to put her career on hold and be Shiloh’s full time caregiver. She will be by Shiloh’s side 24/7 and dad will continue to be their rock and work as much as he can to support the family. This go fund me will help them tremendously with the hospital bills and extra expenses they are having to undergo during this difficult time. They continue to amaze us all , and have so much peace knowing that God is in control of Shiloh’s heart !!! Let’s lift them up on prayer daily and continue to believe that God is the same yesterday, today and tomorrow...He can and will perform a miracle in their lives. Please stay tuned for updates.

Note from Mom and Dad:
”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. We are overwhelmed with the love and support our family, friends, church, community and strangers have shown.

Shiloh is getting another echogram on Monday morning to see how it’s progressed from last week with the medication. We ask for specific prayers that her heart has not worsened. They will also draw blood work to check her BNP levels and see if they’ve dropped for heart risk failure. Her numbers were at 1600 when she got admitted and anything above 100 is considered heart failure state. They’ve also tested Shiloh for a genetic syndrome to see if it’s the cause for her heart condition , we pray that she doesn’t have this syndrome or else it will progressively worsen her heart and risk for heart failure will be higher.

Thank you all for your thoughts and prayers!

God bless you,
Cynthia and Eduardo Bustos”