Sydney is the youngest of 4 children. She has an older sister who was born with congenital heart defects. Mackenzie was born with a VSD, PFO, PDA, and pulmonary hypertension. Sydney's was a difficult pregnancy, complicated by a very serious blood clot at 12 weeks. After my level 2 ultrasound and fetal echo at 19 weeks, we thought everything was fine with her. She was induced at 38 weeks 4 days because I had to stop my blood thinners prior to delivery. She weighed 8 lbs. 0.7 oz. and was 20 inches long. She looked perfect. When the pediatrician came in after her physical (after I had just gone through surgery for a tubal ligation) and told me she heard a slight murmur, I told her to shut up. I was not prepared to go down this road again. Her fetal echo was normal! How could she have a heart defect? The hospital failed to call in the pediatric cardiologist, but we did follow-up with the pediatricians when she was 5 days old. Our regular pediatrician did not hear the heart murmur. I mistakenly assumed all was well.
Sydney did have a brief bout with jaundice, but did not require any treatment. However, at just 5 weeks old, she developed RSV. We spent 2 days in the hospital with round the clock deep suctioning, breathing treatments and continuous oxygen. We came home still on oxygen, but still no one heard her murmur. At 2 months old, still oxygen dependent, I opted to go ahead and have cardiology see her. Imagine my surprise when it took the cardiologist mere seconds to detect not one, but 2 heart murmurs! Sydney immediately had an echo which revealed a small PDA. She also has a Stills' innocent murmur. It took us nearly 6 months to wean her off the oxygen. Her road was complicated by other battles though. She developed cyclical neutropenia and was hospitalized for 2 days after she spiked a fever and they discovered she had no reserves to fight off any type of infection. She also developed a transient vascular obstruction (the true cause wasn't discovered until her heart cath to coil the PDA). Her legs would turn purple to blue for no apparent reason, lasting a few seconds to 15 minutes. Cardiology was again called to consult while she was hospitalized with the neutropenia, but the PC briefly examined her, claimed he didn't hear a murmur and REFUSED to do an echo on her. This was not our regular PC. As soon as we were released, I made a phone call to get a second opinion from a different PC.
Her second visit to cardiology was on August 21, 2002. She was just over 8 months old. The echo showed the PDA was still there. The new PC stated it would need to be closed at some point, and the timing was up to me. The sooner, the better was my response. Her cath was scheduled for September 6, 2002. It was during the cath that we finally learned the cause for her blue legs. They were concerned with the possibility of a low coarctation or vascular ring, but found instead spasms in the wall of her descending aorta as her body tried to force the PDA to close. They placed the coil in the ductus and that immediately resolved the spasms. Now the only time her feet turn blue is when she's cold (which is very normal in our family with a strong history of Raynaud's phenomenon). From a cardiac standpoint, she is now discharged and requires no further care.
She does continue to battle with the immune system issues and mild interstitial lung disease from the RSV, leaving her prone to wheezing with colds and the like. She also has some minor developmental delays, unknown at this time if they are due to her rocky start or the blood clot I had while pregnant.
Sydney finally started walking at 15-1/2 months. Further work-up is pending, with her two older (seemingly heart healthy) siblings to be evaluated this summer and possible genetic work-ups depending upon the outcome of their evaluations.
