And all the Dr.’s would say is if you’re miscarrying then there’s nothing they can do. But she held on. She was a normal birth. Weighing, 8lbs. 5.9oz. & 21 inches long. The nurses said she scored 10. And wasn’t having any problems. After trying to nurse her for 3 days, we found she was tongue tied. The doctors clipped the skin under her tongue, and she was fine. She was never a big eater. She was what I called my bird, nibble here and there. After any activities she would sleep. I just thought she wore herself out. When she’d cry her lips would go blue. Then when she was around 7ish, she told me her chest hurt and it felt like she couldn’t breathe. So the doctors at Johns Hopkins Hospital said since she had RSV as a baby, they diagnosed her with a very mild form of asthma. So though out her life when her chest would hurt, she’d use her inhaler. And everything was ok. She was put into the hospital several times for her breathing problem. Her o2 in her blood always ran around 87% normal people run 99-100%.The only thing they’d do would give her a breathing treatment and her o2 in her blood would go up to 94%, then they’d send her home. No one ever checked her heart. On January 18th 2012, at the age of 16, she passed out in class and wasn’t responsive. The school nurse called me saying she was being sent to the hospital. And that it wasn’t for her breathing. Something else was wrong. A paramedic just happened to put a 12 lead EGK on her and that’s when he saw something was wrong with her heart. They also had to resuscitate her twice in the ambulance. That hospital wasn’t equipped to handle her, so they flew her to Johns Hopkins Hospital, in Baltimore MD. She spent about a week there. That’s when they told us what was going on and that she was stable. Her diagnosis is Severe Ebstein’s Anomaly (EA) with moderate to severe regurgitation at her valve and severe leakage at her ASD (hole in her heart). So we went home not really knowing what EA was, or how it was treated. So to the web I went. EA is a congenital heart defect (CHD). There is less the 1% of all CHD’s that are EA. So that means it’s very rare. Then looking further, I found that she’s the oldest” living” EA patient that hasn’t had surgery. Her dr calls her a unicorn, that with as bad as her heart is, she shouldn’t be alive. But my tough girl is defying all odds. In April 2012, she had a Helix (patch) put in to fix her ASD. This has helped with her o2 stats. Then in February 2013, she had the Reveal implanted. It is a heart monitor and it can record heart arrhythmias. At her last appointment (4/3/2014), she had to do a stress test. She ran up& down 3 flights of stairs 2 times, and 2 fights (up & down) 3 times, till she had to stop. Her o2 was 64ish and her heart rate was 298. But she recovered quickly. Of course she went straight to sleep. And we had to wait a while till she woke up to talk to the doctor. She told him (Dr. Ringel) that she wanted to have surgery. So she could have a somewhat of a normal life. She’s in hopes that she can get married and have a baby in the future. Knowing how her heart is now, she knows that’s impossible. It can barely sustain her. And she also feels that she a guinea pig, because the doctors in Johns Hopkins want her to wait. They want to see how long she can live, since she’s made it this far w/o surgery. So we went for another opinion and that was from the Mayo Clinic in Minnesota. Dr. Dearani wants to do surgery to repair or replace her valve. Surgery date is July 9th, 2014!!!
