About 5 months into our first pregnancy, my wife, Amanda Martin, and myself, Jeff Martin, found out that our child had a congenital heart defect called tricuspid atresia with a ventricular septal defect. Our excitement for our first child quickly turned into a variety of other more negative emotions, including fear, anger and a sense that things like this just weren’t fair. After consulting with specialists, we learned that he would need to undergo a series of two to three surgeries before the age of 4. We decided to put aside our negative feelings and embrace the fact that we were bringing a new life into the world, despite our fears.
Amanda had a fairly normal pregnancy, all things considered. We were blessed to receive the most excellent care in the world from the pediatric cardiology team and the specialty neo-natal team at California Pacific Medical Center (CPMC) in San Francisco. On March 3rd, 2011, at around 10:00am, our beautiful son Jon Michael Martin was born in an uneventful labor. He was whisked off to the Newborn Intensive Care Unit (NICU) and, at about 15 minutes old, began his first echo cardiogram.
The diagnosis was confirmed. To explain in more detail his condition, I’ll provide a brief explanation from the Seattle Children’s Hospital Heart Center that was posted on Wikipedia:
“
Tricuspid atresia is a form of
congenital heart disease whereby there is a complete absence of the
tricuspid valve. Therefore, there is an absence of right atrioventricular connection. This leads to a
hypoplastic (undersized) or absent
right ventricle. This defect is contracted during prenatal development, when the heart does not finish developing. It causes the heart to be unable to properly oxygenate the rest of the blood in the body. Because of this, the body does not have enough oxygen to live, and steps must be taken to keep the child alive. Because of the lack of an A-V connection, an
atrial septal defect (ASD)
must be present to maintain blood flow. Also, since there is a lack of a right ventricle there
must be a way to pump blood into the
pulmonary arteries, and this is accomplished by a
ventricular septal defect (VSD).
Blood is mixed in the
left atrium. Because the only way the pulmonary circulation receives blood is through the VSD, a
patent ductus arteriosus is usually also formed to increase pulmonary flow.”
We were hopeful that Jon Michael would not need to undergo the first surgery, known as the Norwood Shunt. Unfortunately, a few weeks after we brought him home from the NICU, his oxygen saturation levels started to drop and it became apparent that it would be necessary to perform the first shunt. On April 5th, 2011, he was admitted to The Lucille Packard Children’s Hospital at Stanford University and was operated on by arguably the most venerated pediatric heart surgeon in the world, Dr. Mohan Reddy. The surgery was a success and Jon Michael recovered in the Cardiovascular Intensive Care Unit (CVICU) at Packard for about two weeks. He was then released to CPMC for a few days to finish his recovery and we were able to take him home again.
There have been some ups and downs since his surgery; primarily, he has had a hard time gaining weight but the problem is being corrected with a feeding tube and some creative formula mixes. As long as everything proceeds as planned, he is currently scheduled to have the second procedure, known as the Glenn Shunt, on August 5th, 2011.
When Jon Michael was conceived, I had recently lost my job and Amanda was working part-time. We were fortunate enough for Amanda and Jon Michael to qualify for Medi-Cal and another state program known as CCS. CCS took care of his first surgery and will be taking care of his second surgery as well. We will be eternally grateful for these state programs and how they have helped our family.
In a twist of fate, shortly after Amanda and Jon Michael qualified for Medi-Cal and CCS for a year, I got a new job. Fortunately or unfortunately, depending on what day we think about it, we will be enrolled in my company’s group health plan this October. Our predicament is one that I would imagine is common in America these days; even though I am the single income in the household as Jon Michael needs Amanda as a primary care giver, I make too much now to qualify for any of the assistance that has helped us thus far but I don’t make anywhere near enough to deal with the deductibles and co-pays that loom in our future.
This is where our story has taken a magnificent turn. When Amanda’s personal trainer, Josh Cox, found out about our situation, he started a grass-roots movement of support for our son’s plight. There really aren’t words to express how Amanda and I feel about this support. It is overwhelming, beautiful and breath-taking. With this amazing community of loving people behind us, we are about to start a series of fundraisers. The proceeds from the fundraisers and any other donations that come to us will be put in a charity savings account that we are in the process of converting into a full trust fund. It has been set up with the specific intent of paying for any medical costs that arise from Jon Michael’s condition but will also help us with the myriad of other hardships that arise when caring for a sick child.
We really didn’t expect such a large response so quickly. We are still in the planning stages of a silent auction fundraiser, which will be the main event that we are planning, but we are thinking about the beginning of next year. As soon as things are more hammered out, we will be posting on this website as well as through a variety of social media outlets.
Thank you so much for your love and support.
~Jeff Martin
