Ellie and Jon Heinly kindly offered to share their story with others who visit Left Heart Matters.

My husband, Jon, and I were so excited about the baby boy we knew we were having, as we already had a little girl (Jenna, born Feb of 93) and felt our family would be completed, finished, with our addition.

Jenna was on the large side, and I ended up with a c-sec, and wanted to avoid it this time. On May 16, I was admitted to the hospital for induction by having prostaglandin gel inserted into my cervix.

Finally after 24 hours of labor and an epidural, I gave birth by c-sec again at 11:48 am on May 17. He looked great, was 7 lbs, 7 ozs, and was 20 1/2 inches long. I had him in my room most of the time, trying to get him to breast feed. I would have just been happy if he had woken up for a few minutes. The nurses were trying every torture method to get him awake, but every time he was placed on my breast, he would fall asleep right away. I was getting VERY angry with the nurses, felt they were being too rough, and uncaring with Brendan, and asked them to go away and let me try it on my own. The pediatrician came in to let me know that he had a murmur and they would keep an eye on it, and I wasnt too worried. Then the next day, his partner in the business was due to look at Brendan and I said I wanted to talk to him because of the feeding problem.

He stomped into my room and declared that the feeding problem was MY fault, that I obviously was not doing it right, and brushed me off when I asked about the murmur and said it was gone. So, I didnt think another thing of it.

I was so angry at the nurses for what they were doing, I decided to go home a day early, and get the little bugger to eat on my own. The next day the home nurse came and didnt say anything to us, but noticed the murmur and called his pediatrician. We were told to go see him right away. He was given blood tests for his severe jaundice, chest x rays, etc, but nothing was found.

Meanwhile, from the beginning, he was breathing very rapidly, and hadn't woken up except when I did it to try to feed him. So, I called a cardiologist to make an appointment for his murmur because I was a little concerned, and they couldnt get me in for a week. Something inside told me to beg, so I said I could not stand to go a week without knowing about this thing, he is not waking up and not eating, and he is four days old. For some reason, they found me a spot 2 hours later. I now know why. The nurse told me that when I said that, the warning flag went up as to a problem. We were in the office all of 2 seconds when they brought us in and started an echo. 2 minutes into that, he said "we have a very very serious problem". My world crumbled right there, I knew I would never be the same.

The cardiologist finished the exam, told us briefly what the diagnosis was, said he was in heart failure, and told us to get into our car IMMEDIATELY, dont even go home, and get him down to Childrens Hosptial of Phila. The doctor said he would not make it through the night, and said there was a good chance he wouldnt make it down to Phila, so of course that is what we did. I held him the whole 2 hour ride down, as my husband and I both cried. We got to Phila, and the team of nurses and Doctors took over from there. I could not tell you any more about that, I dont remember anything after they took him from me. We were given our options, and chose the 3 surgeries. It was the wednesday before Memorial day and we had to wait till the tuesday after it for the surgery. To finish a long story, he was put on the prostiglandins and had the surgery on May 27, 10 days old, and was home June 3, exactly 7 days later. He had absolutely NO major complications, and the minor ones being that they had to keep moving his IV's as his little veins kept swelling, and apnea from being on the medication for 6 days that they took care of also.

We are 2 months past his birth now, and he is nearly 11 lbs, and is growing extremely well, which we are grateful for. He never had a problem eating, picked it up right away, and smooth sailing since, which we are so grateful for, also.

Sorry this is such a long story, but from the time of his birth, till he was in Phila, we did not go more than a few hours without a problem or doctor appt. We realize how precious he is, having been so close to losing him, every day is like a gift to us. Your whole world changes with something like this, your whole perception of what is now important and what is not changes, also. We are so thankful for each day we have with him, he is definately our miracle child for a few more reasons than are spoken about here! Thank you for letting me share my story, I really tried to shorten it, this is the our miracle child for a few more reasons than are spoken about here! Thank you for letting me share my story, I really tried to shorten it, this is the best I could do!

Ellie and Jon Heinly
parents to Jenna 4 1/2, Brendan 8 1/2 weeks, post Norwood, HLHS