That morning it was planned for Matthew to be circumcised. During the preparation Matthew turned blue. Soon the excitement of big brother Benjamin and my husband coming for a visit turned to devastating news and confusion. A nurse came to my room, called my husband and told him to come quickly to the hospital. I could see she was nervous and gave us some details to prepare for. Luckily we were still at the hospital, fortunately his pediatrician and my OB were nearby, and miraculously the cardiologist had come early to evaluate Matthew. They were all busy stabilizing him and it seemed like forever before the cardiologist told us of Matthew's multiple heart defects: coarctation of the aorta (99% closed), multiple ventricular septal defects (VSDs), and some other defects. That pediatric cardiologist suggested we transfer Matthew to Children's Hospital of Pittsburgh. Prostaglandin's were used to reopen the arterial duct that naturally closes after birth. This kept Matthew alive.
At the Children's Hospital of Pittsburgh NICU we were introduced to cardiologists and Dr. Ralph Siewers (surgeon). Four days later, Matthew had closed heart surgery to repair the coarc using the subclavian flap method, and had a band put on his pulmonary artery to keep his heart safe so at 6 months the multiple VSDs could be repaired. The surgery was a success and bless all who helped us understand and get through that trying time. From that day forward I always say it could be worse. Then my family kept a secret from me for as long as possible: my Dad (who I took to the hospital 8/3) took a turn for the worst and was dying. I left NICU to go say goodbye to my father who passed away on August 12 of heart failure. My Dad's funeral was on the day Matthew was moved to a room so we got a babysitter and went.
Matthew was discharged on 8/16 on digoxin, Lasix, Aldactone and captopril. I was so numb but life went on, just in a different way. Time to enjoy Matthew, celebrate and watch him. Six months passed with a few happenings but none life threatening (like spells which only years later, we found out were probably TET spells). I think the captopril and Aldactone were deleted in October or November, and in late January we went for tests to determine if surgery would be done in February to repair his multiple VSDs and remove the PA banding. First, cardiology said "no we are going to wait" and we were anxious for his repair so we had to regroup our thoughts and understanding. But a week later Matthew's surgeon called and said yes we are scheduling the operation and it is next week on Feb. 12, 1993. We were glad but nervous. Then Dr. Siewers ( the greatest in my book) told us he was doing the operation but would leave 2 days later for a two week vacation. I think I even cried about that one but they reassured us everyone would take great care of Matthew.
The O.R. day came, and Matthew was repaired successfully with a small residual VSD, came off the vent on Feb 14th and sent to a room that afternoon. We as parents (what do we know this early in the ballgame) kept observing and asking everyone "is he ok cause we think he's having a hard time." Well we were really scared and before we knew it, a few hours later he was in congestive heart failure, back in ICU on the vent and the 7-10 day stay didn't happen for us. A heart cath was done to see what was going on and they found his COA repair had narrowed so they ballooned it but to no avail. Weeks went by and Matthew couldn't get off the vent. They tried everything, tested every day for this or that because now he had fevers and other non-heart type complications. It seemed like every day it was something else but all tests were coming back ok. Anyway, his surgeon returned 2+ weeks later and gave his orders to do this, this and that. One thing was to change the vent to a different kind. Matthew then took all the turns for the better. In our opinion Dr. Siewers hands, mind and heart saved our son from additional unexplained complications.
Matthew was in ICU for a total of 25+ days, came home with his first tooth (fevers?), and was discharged during the blizzard snowstorm of 1993. He's doing great. Matthew took digoxin until 1998, Lasix until 1999, had dental surgery in 1998 and goes to the cardiologist once a year for an echo and EKG. He loves baseball and played T-ball last year. Our thankfulness is expressed to all who understand and help us through the ups and downs. We must keep our eyes open a little wider with a CHD son/brother to Benjamin (9 years, healthy heart) and my motto is a parent's intuition almost always is correct. I did not list anything about 1994-1998 - they are too numerous to mention. Are they heart related??? Yes and NO! We as a family of a CHD child are reaching out to you for support...long overdue.
