My daughter's name is Megan. She is the twin sister of my son Matthew. I also have an older daughter, Bridget. On a cold wintery day in February 1990, I thought my life was complete. On that day, my twins were born. They were very healthy, full term babies. Everyday I thanked God for blessing me with three healthy children. I was your typical, proud "Mom of Twins."
On July 13, 1994, that life as I knew it was turned upside down and changed forever. On that day, Megan died of very sudden and unexpected, unknown natural causes. She was a perfectly healthy four year old. She and Matthew were attending swimming lessons at the local college pool. She was sitting at the edge of the pool when she suddenly "slipped" into the pool. The instructor immediately pulled her out. Megan responded by saying she was okay and then went into cardiac arrest. CPR was administered and she was transported to the ER where they tried to resuscitate her for over an hour. I got the dreaded call to go to the ER while I was with Bridget at our Pediatrician's office for Bridget's annual physical. That dear doctor drove me to the hospital and refused to give up on Megan as he assisted the ER staff. The autopsy reports indicated that she was a perfectly healthy child and there was nothing wrong with her . . . there was no reason she should have gone into cardiac arrest and died. The doctors were inclined to think that it had something to do with her heart, but there was no physical sign of disease or irregularities. The hardest thing aside from dealing with Megan's death was not having an answer as to how she died. For two years, we had no answers. We had several forensic pathologists look at the autopsy report and tissue samples. No toxicology studies were done (but that's another story).
After many inquiries, someone suggested that Bridget and Matthew be tested for Long QT Syndrome--a rare electrical problem with the heart. It can cause sudden arrhythmia and possibly cardiac arrest. There is nothing physically abnormal with the heart, and it is usually not diagnosed unless there are symptoms and usually only through an EKG, can it be detected. Unfortunately, Megan's first symptom was her last one. None of us have had any symptoms. It is usually hereditary. Both Bridget and Matthew were tested by pediatric cardiologists several months after Megan died. Both had EKG's and echograms. Bridget was put on the treadmill, but Matt was too young at the time to undergo a stress test. At that time, all tests came back normal--no indication of Long QT. We were told to come back in a few years for another EKG, and not to worry. We still had no answers. I continued to have feelings (my husband and I used to always joke about how Meg was such a strong willed, redheaded Irish lass and that Megan spelled backwards was "Nag em") and continued my search for an answer to Megan's death and the subsequent health of my two other children.
Through a series of coincidences, I was lead to Dr. Victoria Vetter of the Children's Hospital of Philadelphia. In May of 1996, both Matthew and Bridget as well as myself, have been diagnosed with "Borderline" Long QT Syndrome. The doctor feels that this is probably what killed Megan. We will never be 100% sure until they have fully developed genetic testing to positively diagnose LQTS. Now we must deal with our worst fear that the same thing that happened to Megan, could happen to our other children. Fortunately, LQTS can be managed through medication (Beta-Blockers), and we are all now taking Nadolol with good results.
Now we must deal with Matt and his sense of losing his other half--his life partner. We must also deal with Matt going through milestones without Megan being a part of them. Finding others that have lost a multiple birth child has been of great comfort to me. I wish to continue to be in touch with other parents. Since Megan died, I have found much comfort through various online support groups. I have become a facilitator on America On Line for a group we call MOMS LOSS. MOMS Loss (Mothers of Multiples Loss) is a grief support group for parents who have lost a twin(s), triplet(s), quads, etc., of any age. We meet Thursday evenings at 9 PM, eastern time in the Better Health, Mutual Support Lounge. If you are a member of AOL and want more info, you can e-mail me privately.
I send you all Strength and Courage,
Judy R. ~ Mom to Bridget, and twins, Matthew and Megan (2/90 - 7/94 died of sudden cardiac arrest, possibly Long QT Syndrome)
"Some people only dream of Angels, I held one in my arms."