DAY 10: MEET STOSH

Today's story is about a family who is very close to my heart.  Stosh is kinda a big deal at CHOP.  He had an experimental procedure at CHOP before he was born that most defiantly saved his life.  Stosh was born a few days after Xavier, so we had the privileged to get to know the family during both of our surgical stays at CHOP....           

MEET STOSH!!!

Another Ball Game

                Our story goes that we had two children, a girl and a boy, perfect family…But, I wanted one more baby! So…we went for baby #3, and it all played out as before with my other pregnancies. Then, it was the day of our 20 week ultrasound. I remember feeling like it was Christmas day, because I was going to meet my baby on an ultrasound that evening. I was so excited to see him or her on that screen and hoping everything was going to be okay. I did say to my husband driving there that anything could happen, but I really did not expect it to happen.

                At our ultrasound, I got to see the first glimpses of my baby…I was thrilled. Our technician was very chatty, and we talked about life. Then, she stopped talking, and I thought “she needs to pay attention, so I better be quiet.” I continued watching my baby on the screen. At the end, I asked, “Is everything ok?” (knowing full well she couldn’t answer me, but I could not resist). Her answer was, “I will let the Dr. answer that with you.” My stomach dropped, and I asked my husband what he thought about that response. He mentioned that he noticed she spent a lot of time on the baby’s heart.

                Well, we met with my OB doctor, and he dropped the bomb…”Everything looks good, but there is a problem with his heart.” The room stood still at that moment, and my heart broke. The tears came and flowed through the next discussion that we needed to have a higher level ultrasound, and he wanted the specialist to discuss the diagnosis. He thought he knew what was wrong, but he was not going to tell us at this time. He sent us to Lehigh Valley Hospital to see a cardiologist to confirm what was wrong. The one answer I needed was to know…was it a boy or girl? He told us it was a baby boy, and my heart swelled with love for this sweet little boy, who was sick.

                Two weeks later we went to Lehigh Valley Hospital, and learned that we were definitely going to play a new ball game…our baby had Hypoplastic Left Heart Syndrome. The doctor explained that he would need 3 stages of surgery to survive, and his left side of his heart had not developed. He made the referral to CHOP’s Fetal Heart Program, and we received a call from them that afternoon. I cried through that telephone call too, but we scheduled for the following week to meet their team and start planning.

                We went to The Children’s Hospital of Philadelphia the following week, and consulted with their team after a fetal echo.  I had prepared myself this week that our baby was going to need 3 life-saving open-heart surgeries and be born at CHOP.  I could do this (I thought). Well, they sat down and explained that our baby had Hypoplastic Left Heart Syndrome AND he had an intact atrial septum.  The bomb dropped again…we heard your baby’s lungs won’t be able to develop through your pregnancy and these babies do not do well at birth and most likely will not be strong enough to survive the necessary first open-heart surgery. The tears started again, and they kept talking. There was one option MAYBE…an “experimental procedure” and Dr. Rychik could explain it to us.  I wasn’t so sure I could do this anymore, or if our baby was going to make it after all.

                But, the new plan went into place with our  team…at 26 weeks gestation, a stent was place percutaneously through me into my baby’s heart (the size of a grape) to open his atrial septum. It worked…my baby was in the right position at the right time—a miracle!! They monitored him through the rest of the pregnancy, and Stosh was born at 39 weeks via cesarean section. He did need to go immediately into the Hybrid OR and have a larger stent placed in his atrial septum within hours of birth. Then, he went on to have his first surgery at 3 days old.  Stosh was discharged 5 ½ weeks later with a plan to return in two weeks later for another heart catheterization to open his reconstructed aortic arch that had narrowed. 

                Stosh had multiple hospital admissions during the interstage period (between 1^st and 2^nd surgeries).  He needed to have his arch opened a second time a month later through another catheterization.  But…he was thriving at home regardless…eating well, happy and growing.  These babies are amazing and so strong!

We came back at 4 months for his second stage surgery. Stosh had a very rough recovery that lasted 10 ½ weeks and had some complications (narrowing  3^rd time of his aortic arch requiring another catheterization,  function problems with his right ventricle, feeding difficulties and respiratory problems). He finally went home after spending Halloween, Thanksgiving and Christmas all in the hospital.  Stosh continues to be on this journey and lives with medications, therapies, doctor appointments and lots of love. The plan is for him to have another surgery, and we pray his right ventricle gets stronger in the next year.

We learned it is a new ball game, and one we love to play with our special boy!! We have met amazing people…doctors, nurses, therapists and heart families. We are changed for the better, our family is stronger. The life of a child with a congenital heart defect is different, but one you never take for granted.  We will play this game for as long as God ordains. In the meantime, we enjoy each step, milestone and time together.