Welcome to Jacob's Journey. If you are a heart mom and were recently diagnosed, I hope you can find some hope in our story. November 18, 2009 was a day that I will never forget. My husband and I went for our 20 week ultrasound expecting to hear if we were having another little boy or a baby girl. The joy of learning that we were having another baby boy was short lived. The ultrasound tech got extremely quiet and we knew something was not right. She told us that there was something wrong with the heart. We were devastated and so afraid for our son. The next day we went for a heart echo and his diagnosis was confirmed, our son was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where the left side of the heart is underdeveloped of not there at all. Jacob’s was small and completely closed off. He also had a restricted atrial septum. This is the only outlet blood had to move through his heart and children with that added defect have an even lower chance at survival (48%). We wanted him to have the best chance possible so we decided to travel 9 hours to have him at The Children’s Hospital of Philadelphia.
Jacob was born on March 23, 2010. Within hours of his birth that Septum became intact and they were losing him. He was rushed in for an immediate heart catheterization. His x-ray showed his lungs were flooded and the doctors were afraid he would not make it. Jacob did make it, 9 days and 2 bacterial infections later on April 1st 2010 he was stable enough for his first open heart surgery (Stage1: Norwood). This was also the day we were able to hold our baby for the first time. Kissing him good-bye and watching them wheel him to the OR was the hardest thing I have ever done. I told him to be strong and that I loved him. Jacob did very well during his surgery and was off the ventilator 5 days later.
Jacob continued to improve however he had very labored breathing. He couldn’t drink much by bottle because it was too risky and to tiring for him. He had a g-tube and Nissen surgery done on April 20th. After a dose of Morphine I watched Jacob’s numbers on the monitor suddenly drop. The nurse ran in and started patting him and telling him to wake up. They continued to drop and I could do nothing but stand there and watch and pray. The resident ran in and put Oxygen by his face and they hit the alarm; a sound I never want to hear again in my life. The alarm meant they need the crash cart, it’s bad. As a parent every time you hear that alarm you are frozen with fear. About 50 doctors ran in, the room flooded so fast. Thankfully the oxygen brought him back and no further intervention was needed. His body had stopped breathing because the morphine was too much for him. I will never forget the fear I had that moment, thinking I lost him. It is not a feeling I would wish on any parent. It took a few days for the drug haze to wear off but he recovered from his surgeries and we were finally released to come home after 8 weeks in the hospital.
At 4 months old we went back to CHOP for Jacob’s second open heart surgery (Stage 2: bi-directional Glenn). They thought his septum had grown back and went in to clear some more and a hole was punctured in the back of his heart. This is common when going back to get the septum. Thankfully he has an amazing Surgeon and he was able to (with difficulty) close up the hole and stop the bleeding. Jacob recovered amazingly well and we were home just 6 days later.
Jacob started drinking by mouth and within a few months he no longer needed to eat by his g-tube. This kid has a HUGE appetite; he made up for lost time lol. When he turned a year old we had some more testing done because of his “unique” breathing. We learned that both of his vocal cords were paralyzed. Scar tissue had built up around the vocal cords tethering them together. His airway is the size of a pinhole. It is amazing he could even breathe without assistance. Only 5% of kids with the airway can breathe without a Tracheotomy tube and he not only has half of an airway but also has half of a heart!
Even though Jacob has continued to be able to keep his oxygen at a good level for his heart his breathing is dangerous for him. He is exerting too much effort just to breathe and as he gets older it will become more difficult. Doctors in the top two airway hospitals both agreed that he needed a complete airway reconstruction. Jacob had the surgery on April 25, 2012. The recovery was extremely difficult. He had to be on a ton of medication to keep him sedated for 10 days and even with the meds he would wake up and thrash. He had a few IV infiltrations, one caused a blood clot in his jugular. After doing some testing we found out that Jake also has a rare Factor IV Leiden gene mutation. This gene makes him at a higher risk for blood clots if he is in bed recovering and immobile for a long period of time. Now that we know we will have to make sure he is on stronger blood thinners after any major surgery or hospital stay. Despite the setbacks Jacob recovered well and was home a month after his surgery. Since then all scopes have shown that his airway has healed beautifully and he no longer has a loud strider.
Jacob is scheduled to have his third open heart surgery (Fontan) on July 16th. This is the third in the series of surgeries that he needs in order to survive. After this surgery his oxygen levels should increase. Right now his oxygen is usually in the high 70s or low 80s. After this surgery he should be in the 90s. He also should have a ton more energy which is really hard to imagine. He is such an energetic little boy already, I don't see how he can get even more energy lol.
This life is not easy. It is scary but it is also beautiful; watching him smile and play like any other child. His smile is brighter than anything I have ever seen. I refuse to spend my life fearing Jacob’s death, instead I spend it focusing on the beautiful life that we were given. Jacob may need a transplant one day, but the way I look at it is 30 years ago his diagnosis was 100% fatal. Today some centers have a 92% success rate. Who knows what they will come up with in another 30 years. Where there is life, there is always HOPE!
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| Photo By: Rodrigo Pineda Photography |
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