God is good! Alyssa is 62 days old!
Thank you for your prayers. Our prayers were answered today in a most direct and undeniable way!
Alyssa was released from CHOP without heart medication but was said to have congenital heart disease. It was concerning for us not to know the extent to which her heart affected her overall health. Alyssa was born with 3 "holes" in her heart. The two in the upper chambers are VSD 's(ventricular septal defect) and 1 in the lower chamber is an ASD(atrial septal defect). The following was determined by reading the echocardiogram report from 7/16/08 and reviewing that study; as well as a EKG (electrocardiogram) and a second echocardiogram completed today...
One of the two VSD that were present at birth has already closed! The second is nearly closed and most likely wouldn't be present in a few months time!! Dr. D said having one or two small VSD’s is like not having any at all, it really is not concerning. The ASD is small and will likely close (as it is nearly closed now) in the near future. Even if it doesn't due to its size and location there isn't any need to treat it surgically or with medicine.
People with this same type of “hole" live normal healthy lives. At future medical appointments a murmur may still be heard but it is the type of murmur that anyone could have- in other words it is not a condition specific to T18. The bottom line is that Alyssa DOES NOT have HEART DIESEASE. This is wonderful news!!! While we still have other hurdles big and small regarding Alyssa's medical status, this was a BIG one and we feel so blessed. I know the heart can play a role in apnea episodes. Cardiac complications such as heart failure is one of the most often causes of infant death with children with Trisomy.
Dr. D the cardiologist was very kind. He mentioned that he currently treats an 8 year old with T18. He said that incidents of children surviving longer (up to a year) has increased slightly because the medical community IS addressing congenital heart problems in T18 babies. My loose interpretation of what he said is that addressing cardiac concerns may not change the prognosis of the syndrome but it is an encouragement for the treatment of these cardiac complications.
Hearing this news I think of beautiful Brianna Botts and her big blue eyes. I spoke with Brianna's mom last night and she refers to the choice of treating Brianna's heart issues as a main reason for Brianna’s long term survival. Brianna is 17 months old. While I am joyful, we know that Alyssa is medically fragile, apnea and respitory infections (like pneumonia, RSV, or the sort) are another common cause of death. Alyssa has an upcoming pulmonologists appointment to address her diaphragmatic hernia (her diaphragm pushes into her lungs) and access her lung status. Please pray that we would again receive good reports regarding her lung health.
A big prayer was answered today. A healthy heart..wow! Praise God!
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14) Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
I believe this is so true, about the difference in more children with T18 surviving having to do with a willingness on the part of doctors to consider treating any treatable heart conditions. I have heard that it's why Downs Syndrome was once upon a time referred to as incompatible with life, but it no longer is .... because no one blinks at the idea of providing interventions (meds, or surgery) for heart conditions. I am so glad that you have been giving the gift of a cardiologist who is willing to do what she needs. AND that she doesn't require anything! Also, I am so glad about the RSV shots.
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