Jasper’s Heart Story
| Told by his mother Rebecca.
Diagnosis: HRHS, DORV, PA, VSD
The hardest remark was the most common, “Well as long as it’s healthy,” to which I would sometimes reply, well he isn’t, but we will love him anyway! The more I learned about the heart, the better I felt. I had no control over anything, but knowledge gave me some sort of power. We had a shower, family came and everyone was very nice. I did a blog online where I kept accurate info about the dx, websites people could visit to get more info and pics of the nursery and fun stuff. This prevented a lot of repeat phone calls to everyone explaining everything over and over. We planned to do a vbac, but ended up doing a c-sect at the last minute. Jasper came into this world on the 25th of November 2008, 7lb and 7oz & 23″ at 40.5 weeks! Our hospital had a bridge to CHB so he was wheeled over there after birth. We spent all our time at CHB during my 5 day recovery stay at our hospital.
As I write this our son is 8 months, finally growing and getting bigger. We have his cath at 9 mos where they will go in and see how his heart looks to possibly hold off on the next heart surgery as much as they can. They want to see if his right ventricle might grow to be a 2 ventricle type of repair. So we are home and trying to make as many happy memories as possible. We had a doctors apt today actually and I took that bridge from the birthing hospital to CHB. There was a newborn being wheeled over and it still feels like yesterday we were back in the CICU with Jasper. We are so thankful to everyone for helping our son, we are so indebted to all the doctors and nurses! To read more about Jasper, please see their blog: http://www.babyblogs.com/jasper. |
~Rebecca, July 2009 |
My husband and I had been trying for a family for some time with subsequent early losses. While trying to not get too excited by 14 weeks we felt pretty good about the pregnancy. Our ultrasound showed a nuchal fold of 6, we were told a measurement over 3 was a marker for downs, or heart issues. The techs had us pretty worked up, and they seemed convinced that it was a chromosomal problem, we had a CVS and found out a couple of long days later that that was normal. So from there they did another u/s where the tech said it looks like the worst case scenario, we should consider termination, but also get a pediatric cardiologist to perform an echo as well. Of course we were DEVASTATED. The wonderful team at Children’s Hospital Boston (CHB) let us come in a little earlier aprox 17 weeks so that we could at least get some info. They were exceptional. First thing our doctor said was NO T to listen to anyone except a PEDIATRIC CARDIOLOGIST when it comes to diagnosing the heart, and it was not the worst case scenario, and the techs don’t even know what that is. So from there we had echos maybe once a month, the diagnosis wasn’t quite clear as our son was lying in a position that proved difficult to read, but that it was a single ventricle type of CHD. We were terrified but extremely confident in our doctors at CHB. We had a tour of the cardiac icu, I researched everything I could, talked with families online and prepared as much as one could for the birth of our baby.
They didn’t quite get what was wrong with his heart and finally said let’s go in and see. They did a BT Shunt at 7 days. Seeing your baby being wheeled away to an OR is probably one of the worst experiences of your life. It was emotionally draining, as much as I thought I was prepared, you just can’t really prepare yourself. The best advice I heard was some days just take it minute by minute, then hour by hour etc. Also you might meet people with your child’s exact diagnosis, and they might be doing better or worse, as even the same diagnosis can have so many differences. He had a slightly hypoplastic right ventricle, double outlet right ventricle pulmonary stenosis, and VSD. We ended up having a longer stay than anticipated, our son had other issues. He ended up needing a gtube (feeding tube in his stomach), a trach (which believe me we are SO comfortable taking care of now) and he has a helmet for craniosynostosis (left coronal and lamdoid sutures were fused). H wa s in a total of 6 months, with a week or so home here and there throughout our stay.