Andre's Heart Story
| Told by his parents Ron & Isabelle.
Diagnosis: Critical Pulmonary Stenosis, Dysplastic Tricuspid Valve, Enlarged Right Atrium
Birth of Andre (Tufts Medical Center, Boston, MA – May 2008). Thirty-nine weeks into the pregnancy, Andre was born on May 1st 2008 at 1:23am. It was an induced labor because of his size. After 14 hours of labor, a c-section was scheduled. Soon after birth, he was rapidly transferred from the operating room to the Neonatal Intensive Care Unit (NICU), where additional help was given to keep him alive, as he was lacking oxygen. Andre spent 6 nights in the NICU where his oxygen saturation and blood pressure were closely monitored. While there, additional oxygen was required because his oxygen saturation was only measuring 75%. Two nights prior to being discharged from the hospital, it measured 92%. At Home with Andre (May 2008). Life at home Andre was not an easy road. We were in constant fear of his heart condition. We were sent home with no way of being able to check his oxygen saturation. We were only advised to watch for certain symptoms, most of which were normal except when excessive. The problem for us was that we were not quite sure what “excessive” was and therefore lived on the edge of our seats, not being quite sure when to call for help and when not to. Feeding was another challenge we faced at home. We decided that breastfeeding was not going to work because we needed to keep a close eye on the amount of milk he was being fed. He was a hungry baby and so meeting his demand was also a concern. Valvoplasty Procedure at 6 Weeks Old (Massachusetts General Hospital, Boston, MA – June 18th 2008). We since had numerous echocardiograms on fortnightly basis at Tufts Medical Center. The pediatric cardiologist explained to us once again what was going on, and we were still going to wait and see because he was too little to attempt anything else. At 6 weeks old, Andre was referred to Massachusetts General Hospital, where he had another echocardiogram performed. He was admitted to the pediatric intensive care unit (PICU) the same afternoon; he was scheduled for a procedure called valvoplasty for the next day, in the hope that the pulmonary valve could be stretched to allow the blood to flow properly again. There, he spent 3 nights in the PICU and 1 night in the recovery room. Back at home with Andre (June 2008). Andre was still acting like a normal baby. He resumed his regular feeding schedule in no time. A week later, Andre was now 8 weeks old. Another echocardiogram was performed where it was found that the valvoplasty procedure had minimal impact on his heart condition. We were faced with the harsh reality, and that was open-heart surgery. The big question on all cardiologists and surgeons alike – when would be the best time to perform the surgery? The reason was because Andre was still too small. The cardiologist wanted to get it done as soon as possible (as they feared an arrhythmia), while the surgeons wanted to wait until he turned 4 months old (which was the minimum age that this type of operation should be performed). After careful consideration of all the factors by all of the experts involved, we got a call from the chief of pediatric cardiology at Mass. General Hospital advising us that the best option for Andre would be to have the surgery as soon as possible. Open-Heart Surgery (Boston Children’s Hospital, Boston, MA – August 2008). The weeks to come were not pleasant. The dilemma as to when the best time to operate on Andre was still looming on everyone’s head. The surgeon finally contacted us. He said he looked at the echocardiogram and he would like to schedule the surgery for end of July or beginning of August. August 4th was the day, when Andre would then be 3 months old. This is the day we would rather forget but will stay with us forever. When Andre was taken away from the pre-op room, our heart sunk deep and tears were shed. Were we going to see our little guy again? After 4 antagonizing hours, Andre was out of surgery and was a complete success. His pulmonary valve was stretched out, his tricuspid valve fixed, and the size of the right atrium reduced. He stayed two nights in the Post Anesthesia Care Unit (PACU) and 3 nights in the recovery unit. Andre is Back Home Again (August 2008). Andre was well enough to be discharged, and once again we tried to be a normal family again, trying to forget very quickly the events of the week. The problem is that we will never be able to do so as the scar will always remind us of that day.
To read more about Andre, please visit: http://andreswalkwithchd.blogspot.com/ |
~Ron & Isabelle, July 2009 |
How It All Began (Beverly Hospital). Andre was born with a congenital heart defect called severe Pulmonary Valve Stenosis. It was in February 2008, six months into the pregnancy, that we learned the news. After a routine ultrasound at Beverly Hospital, the ob-gyn noticed an enlargement in the right side of the heart. She immediately scheduled us for an Ultrasound II at Tufts Medical Center in Boston. As we watched the monitor together with the technician who was performing the echocardiogram, we asked questions, not really understanding what we were facing. An hour later, we learned what was to be the beginning of a long road of uncertainty with the state of Andre’s heart. We learned that the pulmonary valve was very narrow and it was causing backward flow of the blood, causing the right atrium to expand. The tricuspid valve was also not positioned correctly. Next, a Tufts Medical Center pediatric cardiologist was appointed to us, and numerous fetal echocardiograms were scheduled during the rest of the course of the pregnancy. While we watched the echocardiograms there, we could see that the heart was not healthy; the pediatric cardiologist advised us that it was best for us to wait and see what would happen at birth and be prepared.
What’s Next For Our Family? Due to the open-heart surgery, Andre had to be picked up in a certain manner until the wound healed. As a result, Andre is a little behind with his motor skills. He may require physiotherapy sessions because his left arm and leg seemed to be more active than the right side. Due to the first valvoplasty at 6 weeks, his right leg is significantly bigger and no one seems to know how to resolve that issue at this time. It appears that Andre will need to undergo further valvoplasty procedures because his latest echocardiograms are showing that his pulmonary valves are tightening again. We are uncertain if more open-heart surgeries are on the horizon. In addition to those uncertainties, we don’t know if Andre will be limited to certain activities, such as sports. If so, we live in hope that one day Andre will understand why he will be limited to certain activities while his friends won’t be. We will also have to make sure that antibiotics are admitted to him prior to any dental visits or procedures, and constantly educate him how to keep away from germs. Perhaps home schooling will be our best option for his education because of the increased risk that infections have on heart patients. This will bring up another challenge for Andre, and that is, the ability to make friends, socialize with them without the constant fear of catching something harmful. Finally, many unknown factors constantly make us question whether we are doing the right thing for Andre’s health.