Dr. Michael Vincent with Nora Lambert

Can you tell a little bit about your family’s SADS journey?

My son Matthew was born in 1969; he was the third child. His first three years were absolutely wonderful –he was a fine healthy boy. He suddenly got a rash one day, and I took him immediately to the pediatrician. She said, we won’t give him anything, we’ll see if the rash reacts to powder – which it didn’t. The next week, I took him back, and she gave him an antihistamine. A few days later, he was skipping outside in the yard with his big brother, and he suddenly collapsed on the lawn. We took him immediately to the hospital and our pediatrician met us there and kept him overnight. He seemed fine.

This was during Mardi Gras, which is very exciting. The next day we continued to celebrate. We’re at a parade and my son is going down the hall to get water and collapses again. We went back to the doctor, and then to a neurologist, and that became a long series of hit-and-miss appointments. They gave him phenobarbital as a protective measure, which altered his primary school situation – he was lethargic and slow to finish things. This went on till he was 10, so for seven years.

He was in middle school, and we were cautioned that he shouldn’t engage in any sports. It was a time where he was not gaining independence, as all kids should – he was dying to play ball. In the meantime, between the ages of three and ten, we had been on phenobarbital, we had all kinds of EKGs every time he passed out and we would go to the hospital – the doctors were looking for clues that didn’t seem to surface. We even tried glucose fasting tests to see if that indicated anything. We exhausted everything and followed everyone’s suggestions trying to get to the bottom of it.

This lasted until 1979 –  we were going this whole time on a hit-and-miss diagnosis. Then a miracle happened. I was having lunch with a lady and had a long conversation with her. I mentioned my son’s situation, and about 2 weeks later, she wrote me a letter and asked me if I had ever been told about prolonged QT syndrome. If I had not, she wanted me to go see a doctor in NOLA and tell him what was happening.

The doctor was on his way to a meeting in Italy to discuss Long QT Syndrome, and said there was international interest in it. He told me to have an EKG run, and he’d review it when he came back. When we went to his office, he showed us a brochure and said this is what he has – LQTS –  and it’s fatal. We were told there was nothing we could do, except for an operation that would paralyze his face. We left the office very much shaken. My husband said, we’re not going to pay him any attention, because our doctors have observed our son all these years and they said if he went for two years without fainting, then it was probably idiopathic. We were almost at that cutoff, and then he fainted again.

We went back to all the doctors and gathered his records. I told my pediatrician, I want all his records from everybody, and we are going to solve this ourselves. We have a wonderful medical school in New Orleans, and the pediatrician referred us to a doctor there. He was absolutely wonderful. By the time we got to see him, my son was 10 or 11. I told the doctor, we have tried everything to keep him well-balanced and we have succeeded. We called his medicine a tonic, so it seemed like the vitamins his friends took. It was important for us to keep him with a good outlook, even though the things that were happening were really scary. Other kids playing with him would get scared too.

This new doctor did an EKG, and then told him to jump as fast as he could, and laid him back down and did another EKG. He told us that the other doctor was correct – he had LQTS. My heart sunk. He said he would contact us in a few days. That was June. By August I figured we just wouldn’t hear back from him. We got a call in August from a female doctor who asked me how were we doing on the medicine. I said I didn’t have any medicine from the doctor at the medical school. She referred me to cardiology.

We got to the cardiologist, and went alone without our son. Through this harrowing journey, we tried to remain calm and keep things well-balanced. Like all the doctors we met through this journey, this cardiologist was the best around. So I don’t fault him for not picking up on this problem.

Eventually, in 2005, Dr. Vincent spoke in New Orleans at a small gathering with Dr. Michael Ackerman. We learned something that night – there were some people who reacted well to beta blockers, and others who had implants. At that meeting, we talked to Dr. Vincent, who was ready to retire, and asked him if he could have an appointment with my son even though his office was in Salt Lake City. We went through a number of tests to find out if our LQTS was hereditary. Sure enough, the testing showed that not only did my husband have the gene, but I had it too, which was astounding. My son had inherited them both, which was quite a dose for him to be carrying around. From there, we had a focal point as to what to do. Our whole family got genetic testing. I’m one of seven – two brothers were deceased, two other brothers were negative, but my two sisters and I were all positive.

My son is now grown and has a grown son. Dr. Vincent referred them to a place for genetic testing in Washington D.C. where they live, and the baby does have my husband’s gene. He’s 14, and has never had any indication, except they have him on beta blockers as a precautionary measure. He’s fully active. My husband and I have been to Mayo to see Dr. Ackerman and we are all fine.

What was the greatest obstacle to treatment that your family faced?

My son’s first faint was in 1973, we didn’t hear anything relevant (except by accident) from a doctor until 1996, when Dr. Vincent’s article explained Long QT in Reader’s Digest. That’s a long time to wait for a full understanding of his problem.

It took so many years before we could really take an easy breath. Now we are in a situation where we’re not panicky all the time, and my grandson does fine, and my son has not had any problems – he’s now 51 goes to Mayo Clinic to see Dr. Ackerman. We moved heaven and earth to find the best for him. LQTS was hardly even mentioned in medical books. His whole life, we were looking for any clue that we could find.  But so much has been achieved in the last 20-30 years. It’s only going to get better, thanks to the SADS Foundation.