Isaih was born at 36 weeks and he was diagnosed prenatally with complex congenital heart disease. In the beginning, the cardiologist told me that it could possibly be a simple procedure and they may be able to fix his heart once he was born. After birth, the doctors did an Echocardiogram and it confirmed the congenital malformation which included double outlet right ventricle, right ventricle hypoplasia VSD, transposition of great vessel (TOGV), heterotaxy and asplenia. He has a common AV valve with moderate degree of insufficiency and a single left ventricle with mildly decreased systolic function. He was fed through nasogastric tube (NGT) at 6 months old until he turned 6 years old. He had his fist cath just 14 days after he was born on 02/6/2014; they told us that his condition was inoperable and we decided to go with palliative care. We then decided to take our son home and just live day by day. He was sent with hospice; thankfully after 6 months of supervision they decided that it was ok to discharge him from hospice and continue with cardiology checkups and his primary care doctors.

Even though his first years of life were hard, he is a very happy child. He likes to play, laugh, and talk with everybody. He likes to dance, make videos with his sister, go fishing with his dad, and just spend time with his family. He also loves to go in the water. I am just so grateful to have him with me and be able to create memories, even though we have been living with that fear of losing our son any moment. It’s rewarding that I get to be able to see him grow and go to school, see him draw me these amazing I-don’t-know-what drawings. I just love to see him by our side, see him forming his personality and all his humor.

Due to his condition he can’t be in the sun for long periods of time and he can’t walk long distances or run at all. He has to have moderated activities. He is able to play and all, but once he starts to cough that means he is very tired and needs to sit down, drink some water, and breathe. It is hard because kids at his age want to be running, riding a bike, and jumping around. I just want him to be able to do all those things and whatever he wants to do.

Now, there is light in our 6-year tunnel: Isaih was listed on the heart transplant on 01/26/2020 — 1 year 3 days after his 7th birthday — and we are waiting for that call that every parent dreams and pray that we get that call. I think we are ready for this new blessing that will bring our big boy to life one more time with a new perspective of life that he has never had. 

We just want to thank everybody that donates to COTA for Isaihs Hope to assist with transplant-related expenses, and that helps us share and are interested in Isaih’s story. May God keep blessing you guys, and thank you COTA for all your help and support.

Sincerely,
Isaih’s family

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.