Tuesday, December 9, 2008

I emailed and asked...Has anyone's child had to have a heart valve replaced?

Sunday night after we had been given the news that it looked like Reid would need to head back into surgery in the next few days I was so burdened. I couldn't sleep that night so I stayed up and sent a mass email out to about 100 women who live in the general LA/Orange County area who also have children with Down syndrome, to see if anyone else's child had gone through this. The next time I checked my email, the email below was in my inbox and I had the chills...


My son Isaac had a mitral valve repair at 2.5 years with Dr. Starnes at Childrens LA. Pre-surgery, the surgeon and cardiologists said that the fix was easy and a procedure that they have done millions of times. Post-surgery, everyone thought it was a success. A week after we went home and at a follow up echo with the cardiologist, we were told too that the leak had been greater than and in even more places than prior to surgery. It would seem that the surgery did MORE damage than prior to surgery. The echo was sent to Dr. Starnes and he thought some sutures had pulled through. We asked him given his expertise and experience, how often do sutures pull through. He said almost never. We were told we'll need another surgery to try to go at it again- without much confidence from the surgeon as he relayed the best outcome should have been the first round. We were told to be thinking about an artificial valve for the 3rd round if the 2nd round was unsuccessful.

While we were considering our options between a 2nd surgery to re-do the 1st one and a possible 3rd for either an artificial valve or a pig valve, we monitored the leakage or any enlargement of the chambers with a weekly echo. About 2 months after the surgery, the cardiologist asked me the weirdest question in the middle of an echo. He said "Have you been praying?" The truth was I never prayed in my 31 years of life until I was faced with the prospects of multiple surgeries for my son. I thought if science was not doing it for us, the only thing left for me to do for my child was ask help from the supernatural. I have never prayed with more sincerety than I had the 2 months following Isaac's surgery. The echo that day showed a much diminished leakage than before. We were told to come back on a monthly basis, then on a 6 month basis, now on an every 3 years basis. Isaac just turned 9 yesterday- its been 6.5 years and his heart is doing great.

I had never been religious nor am I today a fervant believer. But I do believe I was heard, that there is a connection that was absent prior, and that I was blessed with a miracle. The doctors say that the post surgery swelling that makes the leakage seem worse might just takes 2 months to return to normal. That could very well be the truth- and that is why I felt compelled to respond. I don't have a heart valve replacement experience to share, but I was facing the same decisions you are now and our story might be a possiblity you or your doctors have not considered. If there are signs of enlargement in any chambers, they would have to do the surgery sooner than later. But if they are not seeing signs of enlargement given the leakage, could you hold out as long as you can to give the little guy a chance to heal?


I responded back to Marian with tears down my face and asked permission to publish her story, a story that is too neat not to share. Thank you again for reaching out...your email was more encouraging then you will ever know. It reminded me that faith, even the size of a mustard seed, can move mountains! 


SunflowerMom said...

I have chills now too! I have been thinking and praying for Ried many times a day. I hope our prayers continue to be heard! Heal fast, little man!

Judy said...

Wow! What an inspiring story! Thanks for sharing that...I needed to hear a miracle story today :)

Reid is in my prayers throughout the day (as are you, Toby and Luke).


Aaron and Amy said...

Thank you for sharing that email. We, too, believe in miracles, and have been praying for Reid and your family. Our Matthew is a miracle - he wasn't expected to live at all, but miraculously grew an aorta, a left ventricle, and patched his VSD all on his own. I truly believe it was because of the power of prayer - he had a lot of prayer warriors. We will continue to pray for Reid. Thanks for keeping us updated.