Hello Everyone, our names are Denise and Jose.
We have 2 beautiful daughters. One is an 11-year-old daughter who always has a big smile on her face. My second is a 7-year-old who always has a lot of energy all the time.
Since my son was born with his condition, we haven’t been able to spend time with them. We are about 1 hour and 20 minutes away from home. It’s been a very hard time for us.
Here is our son's story.
In 2024, we were blessed with our rainbow baby boy after 5 miscarriages in a row. At my 20-week anatomy scan, we received horrible news. We were told that something was wrong with our baby boy's heart. His left heart was not developed properly. They did extra testing and ultrasounds to find out how serious his condition was. We were told by doctors that our baby boy Jassiel has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS). This condition is a rare congenital heart defect that causes the left ventricle (lower chamber) of the heart to be underdeveloped. This diagnosis of HLHS means our baby boy will need 3 open-heart surgeries: the Norwood, Glenn, and Fontan.
The Norwood procedure is performed within days of birth. Thankfully, our baby boy was doing great the first few days of being born. On January 18th, we found out that his oxygen levels were getting very low. He needs a stent in his heart in order to get his oxygen levels normalized. We are praying that everything will be fine with our precious baby boy. After the procedure, it will take at least another 4 more weeks of being hospitalized to see how he does.
The Glenn procedure is performed when the child is around 4 to 6 months of age. This is the 2nd surgery that will be needed.
The Fontan procedure is performed when the child is around 18-36 months of age. This is the third surgery that my son will need in order to have a good survival rate.
Despite all the sad news, we are not giving up on our baby boy Jassiel. I know God sent us our precious miracle baby boy for a reason. We are not giving up on him. We will continue to update this page. We appreciate all of the prayers, the love, and support. It means so much to us.
Today my son’s cardiologist came in told us not very great news for us. My baby might need a other procedure done. His oxygen levels are not what they want for a few days now. Praying that he won’t need it.