Jeremiah was born with a congenital heart defect. We found out at our 18 wk ultrasound that there was something wrong with his little heart. After multiple ultrasounds, many echos, transfer to the UK team, & then another transfer to Cincinnati, we gave birth to our otherwise healthy baby boy on August 4th
. He was born with transposition of the great arteries, an ASD & a significantly large VSD, pulmonary stenosis, & a cleft mitral valve. We spent his first 2 wks of life in the cardiac ICU where he underwent two heart cath procedures to allow for adequate mixing of the blood in hopes to carry him over until he was big enough for open heart surgery. Within a month, we were back for an overnight stay at Cincinnati Children’s for a blood transfusion & then again the next month for yet another cath procedure to enlarge the stent that was placed prior near birth. The goal was to beef up this baby to 5kg & when he exceeded that & was doing so well, they raised the goal to 6-7kg. His date was set in Dec to have open heart surgery January 22nd. Upon admission to this hospital stay, Jeremiah was 7.5 kg, having exceeded yet another weight goal!
His open heart surgery went better than expected! Both cardiologists (in Lexington & Cincinnati) & the cardiothoracic surgeon thought he would have to have a single ventricle repair. We found out during the procedure that the doctor had successfully repaired his heart to two ventricles. Unfortunately, his AV node and SA node would not pick up communication after surgery and after 10 long days of waiting, he went back into the OR for a permanent pacemaker. Jeremiah has a pacemaker implanted into his belly to make sure that his heart functions normally. According to the doctors, this is not a setback nor do I have much negative things to say about it. It’s what his little heart needed. He’ll have just a few limitations but should live an active & healthy life!
David was born on August 2, 2006. He is a twin. At my 18 week ultrasound the tech couldn’t find his aorta and the four chambers of his heart were not the correct size. We were referred to Dr. Goble. As she was doing an ultrasound she kept saying, “I can’t believe they found this”. Normal ultrasound techs are not trained to see that much detail in the heart. We were referred to UofM Mott. David’s twin Matthew is completely healthy.
David was diagnosed as HLHS until he was born. We lived in Lansing and due to David’s heart and twins we were scheduled for a C-section. Once David was born his diagnosis changed to Shone’s Syndrome. He had ADS, VSD, Coarctation of the aorta. He also has issues with his aortic and mitral valve. His first surgery was when he was five days old. He’s had a total of four open heart surgeries and two caths. He has been surgery free since May 2012 and isn’t even on any medication. Other then his learning disabilities and that he’s super skinny you wouldn’t even know he had anything wrong with him!