Pre-birth
After our first ultrasound at about 20 weeks, we received a call from the doctor’s office. “We need you to see the geneticist for another ultrasound. We can’t see the left side of the baby’s heart.” During our visit with the geneticist, we were given the bad news. The baby had Hypoplastic Left-Heart Syndrome (HLHS.) The left ventricle of his heart had not developed. Next, we were sent to the Pediatric Cardiologist for another ultrasound. He confirmed the diagnosis and explained what our choices were: 1. abort the fetus, 2. “let nature take its course,” which meant death within hours or days following birth, 3. The Norwood Procedure – multiple stages of surgery over several years, and 4. TRANSPLANT.
After researching the baby’s condition, we decided upon transplant and started looking for a good program. The medical center at the University of Arizona did not have much experience with infant heart transplant and couldn’t be considered an option. We looked at hospitals in Denver and Salt Lake City, but finally decided on Loma Linda University Medical Center in California. It was the transplant center closest to home and with the most experience. The fetal heart has a ductus that routes the blood differently. As long as the baby was in the womb, his heart would function normally, but after birth, the ductus closes and the left ventricle is needed to pump the blood out to the rest of the body.
At the time, there were no “happy ending” stories of infant heart transplants in our area for us to talk to – just sweet parents who lost children and were grateful for the care the medical staffs gave. We had considered giving birth in Arizona and then having the baby flown out to California at the time of transplant. We had one meeting with a Phoenix Perinatologist who tried to tell us that infant heart transplants weren’t being done anymore. That gave us the motivation to move Linda out to California to give birth at the hospital where the baby would have his transplant. His care would immediately involve the transplant team. In early October, we rented an apartment a couple of miles from the hospital. Linda and her friend, Pam, drove out to Loma Linda and got settled in with the help of some church members there. The baby was listed for organ transplant in the event that a donor heart become available. They would be able to do a c-section and then a transplant immediately after.
Birth and transplant
Jerry had built up quite a few sick days over the years at his teaching job at the high school. He and the kids stayed in Arizona, working and attending school. Jerry’s mother lived next door and helped take care of the kids. Every other week, they would take Friday and Monday off to spend a long weekend together as a family in Loma Linda. It was exactly 334 miles from our house to our CA apartment. We knew every signpost and pothole in between.
On October 31st, the doctor asked if we wanted to have a baby that day. After 39 weeks, we thought it was about time. They induced labor, and a few hours later, Charlie was born. Linda’s grandmother, Clara, was staying with her at the time, but Jerry and the kids were there as well. We had plans to take the kids to a Halloween party at the church. The medical staff gave us sets of surgical scrubs for costumes, but Charlie came and we never made it to the party – the kids didn’t really mind. After his birth, Charlie was whisked off to another room, stabilized and given medication to keep the ductus open and his heart functioning as it did before birth. This could be continued for weeks if necessary. Within eight hours he began to have difficulty breathing and had to be put on a respirator.
Jerry looked at the calendar and told the doctors that November 20 would be a good day for transplant – Thanksgiving and all. Sure enough, the evening of the 19th, we were all at the apartment with our phone and beeper when we got “THE PHONE CALL” from the transplant coordinator. We cheered and wept and hurried over to the hospital. We took some photos of Charlie without a scar on his chest. We knew it would never be the same. We bonded with several families who were going through the same things we were. Another family got the same call for their baby son, Tommy, and they ended up waiting for the table while Charlie was being operated on the next morning.
November 20 also turned out to be the 10th anniversary of the first successful infant heart transplant, which happened to be performed at Loma Linda. A big party was being held in another part of the hospital during Charlie’s surgery. Media covered the event then interviewed Charlie’s parents and Tommy’s parents because of the unusual circumstances of two back-to-back infant heart transplants. The reporter put on his appropriate sad/concerned expression, “So, have the last few days been. stressful?” We thought it may be the dumbest question ever asked. Jerry gave him a long list of stressful things we had been going through.
Charlie was kept in a special isolated ICU and we all were very careful about germs. The kids didn’t get to see much of Charlie. He was kept in the hospital longer than usual because of rejection episodes. Even after he was released to go to the Loma Linda apartment he had some rejection and was hospitalized and treated several times. That kept us in California for months. He even had his gall bladder removed because it had filled with stones due to the medications.
Life in AZ
Finally, after close to 8 months, we were able to move the entire family back home to Mesa. It was a grand celebration for us and so many of our friends. Cardiologists referred parents facing HLHS to us. Finally there was a “happy ending” story in Arizona for other parents to lean on. We got involved with Donor Network of Arizona and volunteered as speakers and in the organ donation booth at several events . Charlie was a favorite among them. All of the other volunteers and transplant patients were older, of course.
Life started to become “normal.” Multiple medications, monthly trips across the Valley to different doctors and hospitals for checkups, extra caution against viruses and germs, and slowly beginning to treat Charlie like a normal baby- and soon- toddler. He had a minor eye surgery to correct some cross-sightedness and couple of times and later had his appendix out. He was hospitalized and treated for rejection almost yearly.
As a toddler, Charlie’s fascination and fixation on spinning things, his sensitivity to tastes and sounds, “echolalia” and developmental delay led us to have him tested. He was diagnosed as having autistic symptoms. He qualified for special education services in preschool and in elementary school. In 1998, our little girl, Rosie, was born. In 2000, we moved from Mesa to our Chandler home and 1.25 acres and animals. Charlie and Rosie love it. Charlie has developed his own style of art – looking for just the right color of crayon. We have hundreds of beautiful, colorful drawings. Charlie is so sweet that he is very popular at school, especially with the older student helpers that visit his class. He is a joy to his teachers at church- and cub scouts, too. We have included some of his artwork here on this site. You can compare it to his mother’s, too. He likes singing along with Dad’s quartet to “Take Me Out to the Ballgame”, and “Jingle Bells”- no matter what time of the year.
Recent health changes
Charlie has had bouts of rejection over the years. Otherwise, his health is good. He very seldom becomes ill. He has annual heart catheterizations where they snip a little of the heart muscle and study it looking for signs of rejection and coronary artery disease (CAD.) That is what the doctors and we feared the most. One little boy that we knew died from it. The arteries around the heart muscle become smaller and less effective. If there is enough damage, the heart muscle does not get blood to that part and the pumping is affected. Over the last couple of years, Charlie’s tests haven’t looked as good. During school year 2003-2004 he had recurring bouts of “Fifth Disease” causing him to become anemic. He kept testing positive and contagious so he missed a lot of school. He had few visible symptoms. In the spring he had some EKG’s that didn’t look good so they flew him to Loma Linda Hospital and did more tests, especially for CAD and possible retransplant. All the tests were negative, so they sent him home. (Thanks to Ronald McDonald House for inexpensive, close-by lodging.)
FINALLY, March of this year, Arizona doctors did another annual “heart cath” and found significant change in the looks of the coronary arteries. He was diagnosed with CAD. They showed us the pictures comparing his heart to a “healthy” heart and started the process toward re-transplant. This time, we would like to have it done in Tucson instead of traveling all the way to Loma Linda.
