Daniel’s story as told by his Mommy:
On Oct. 21st, 2011, our third child, Daniel Robert was born. At his final pediatric evaluation prior to discharge, Daniel was found to have a significant heart murmur and undetectable femoral pulses. Instead of going home, we were rushed to Children's Hospital Boston's Cardiac ICU.
He was quickly diagnosed with coarctation of the aorta, several ASDs, a large VSD, bicuspid aortic valve, and parachute mitral valve. We were moved to the regular cardiac floor where we were observed for several days. Thursday afternoon a third Echo was performed on Daniel and it was determined that his condition was severe enough to warrant open heart surgery the following day.
Friday, October 28, 2011, seven day old Daniel underwent open heart surgery where the surgeons removed the coarctation in the aorta and closed the ASDs and VSD. Eight days later, at 15 days of life, he was discharged home.
One month later, November 21st, Daniel was rehospitalized due to a loud stridor (a harsh vibrating noise when breathing). He had had a bit of a stridor since surgery, which we had been told was a result of the intubation. However, it had intensified since then so we were admitted while the causes were being diagnosed. Upon discharge, on Thanksgiving Day, Daniel was diagnosed with a bilateral vocal cord paresis that was a result of an aggravated vocal cord during surgery. Thankfully it only took one month for his vocal cords to heal though we had been told that it could take up to six to eight months.
Between November 2011 and January 2012 there had been an increase in the stenosis at both his aortic and mitral valves. Daniel continued to be closely monitored by the cardiologists and our pediatrician. At his June 2012 appointment it appeared that his heart had remained stable, though there were a few areas of possible membrane growth they were possibly seeing. In December 2012, the doctors confirmed a subaortic membrane growth, but all other areas of stenosis at the valves have continued to remain stable.
In other areas of development, for a while Daniel seemed a little behind in his gross motor abilities. So, he received physical therapy through Early Intervention. However, now he seems on track and has recently started speech therapy. He is also followed by the Cardiac Neurodevelopment Program at Children's Hospital Boston.
Daniel's future is still uncertain. Depending on how his heart performs, he may not require additional intervention. However, in the months or years ahead further intervention could be required the in the form of a heart catheterization or open-heart surgery in order to repair the valves. The more I learn about Congenital Heart Defects and about the operation he endured, the more amazed I am and thankful I am to have our sweet little boy with us.
You can learn more about this wonderful family on their blog: divinelywoven.blogspot.com
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