By Mollie Jones
Mommy to Andre
Congenital Heart Defect – Hypoplastic Left Heart Syndrome
April 11, 2022 – January 20, 2023
Our journey began in January 2022, at about 6 months pregnant with our first child. We were told that our unborn son’s heart was no longer developing, and we were sent to specialists two hours away from home for further testing. After the testing was completed, we were told that our son had one of the worst heart conditions that there could be; he was diagnosed with hypoplastic left heart syndrome that day.
In the beginning, we hoped Andre would be able to have his first open-heart surgery and go home in the following weeks to grow for his second open heart surgery. I hoped that everything would go smoothly with no complications, and that Andre would be ok going through it all.
Andre’s diagnosis impacted everything. It impacted our birth plan, it impacted family being able to meet him after he was born, and impacted us financially with having to be in the hospital with Andre for months on end. It impacted us mentally because it’s hard having a baby go through all of that, and not knowing if he’s going to be OK in the end, or if you’ll ever get to take him home.
During his first open-heart surgery at just 8 days old, Andre had a lot of bleeding and was placed on life-support called ECMO, prolonging his recovery in the hospital. Fortunately, he recovered and eventually went home after 73 days. He was home for about five weeks.
In August he had a pre-glenn catheterization (a procedure done preoperatively to prepare the heart for another surgery) and four days following was readmitted to the hospital for heart failure. He was in the hospital until he received a heart transplant on December 20, 2022. And he never left.
I know that it was hard for Andre, but regardless, through everything, he was always smiling and laughing. He didn’t really know what was going on and being in the hospital was just normal for him all nine months of his life.
However, after the transplant, the heart that he received was diagnosed with hibernating myocardium, and he was placed on ECMO for the second and final time of his life. One month exactly after Andre’s heart transplant Andre passed away. His heart and kidneys were too damaged to receive another transplant.
After losing Andre in January of 2023, it felt like our world fell apart, and there was no point in trying to piece it back together because the biggest piece of our life had gone forever. I hope that eventually there’s a better option than your newborn child having to have open heart surgery. I hope that there’s some kind of fetal surgery that can help or something that they can do while you’re still pregnant with your child that will help that heart grow even more. I just hope that eventually moms and dads won’t have to lose their babies the way that we did, and I hope that one day babies don’t have to go through what Andre and other babies go through.
Andre has since become a big brother to a heart healthy little sister, Tatiana. She has brought joy back into our lives! We tell our rainbow baby all about her big brother and how strong he is, and how he’s watching over her. We want to make sure that even though they never met, she knows her brother and loves him like we do. She plays with his toys, and wears some of his clothes. And it brings us so much joy seeing so much life go back into Andre’s belongings. She looks so much like her big brother, and reminds us of him every day. We eventually want to do something in his honor – we’re not sure what yet, but a yearly toy or clothing drive to donate to the heart center would be extra special.
The impact On Angels’ Wings has made during our journey has been huge. Without them, we never would’ve been able to get family pictures with our boy. We were never really certain if Dre was ever going to be OK, and being able to take family pictures and have even just a little bit of normalcy made everything feel just a little bit better. And when it was decided to remove Andre from life support, OAW came in and took one last set of family pictures – I feel like it helped a lot in those moments. I still look at those pictures every day.
OAW has also done pictures with Tatiana being our rainbow baby, and including Andre in those makes us feel so at peace. It’s hard to find someone who understands just what she means to us and who also knows Dre’s story, giving us space to include him and honor him. It’s so much more than just pictures, it’s making memories for us that we will keep for a lifetime.
If you are in a situation like ours, call On Angels’ Wings. Absolutely go for it, get the pictures. OAW volunteers and staff are great people, and they care so much. It goes beyond the pictures. Even if it’s hard in the moment, you will be thankful you have their love and support along your journey.
