Yes, it's exciting news but the scary part is that our baby girl, Evelyn Grace has been diagnosed with Hypoplastic (pronounced hi-puh-PLAS-tik) left heart syndrome or HLHS which is a birth defect that affects normal blood flow through the heart. We will be going to Gainesville, Florida mid-September, her due date is September 28th but all our other children have been early and it has been recommended we go about two weeks early. We are asking for donations instead of a baby shower or anything like that to help with travel expenses and to get needed baby items. Thank you so much for your thoughts, prayers, love and overall good vibes.
What is Hypoplastic Left Heart Syndrome?
Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. Hypoplastic left heart syndrome is one type of congenital heart defect. Congenital means present at birth. Because a baby with this defect needs surgery or other procedures soon after birth, HLHS is considered a critical congenital heart defect (CCHD).
Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, for example:
· The left ventricle is underdeveloped and too small.
· The mitral valves is not formed or is very small.
· The aortic valve is not formed or is very small.
· The ascending portion of the aorta is underdeveloped or is too small.
· Often, babies with hypoplastic left heart syndrome also have an atrial septal defect, which is a hole between the left and right upper chambers (atria) of the heart.
In a baby without a congenital heart defect, the right side of the heart pumps oxygen-poor blood from the heart to the lungs. The left side of the heart pumps oxygen-rich blood to the rest of the body. When a baby is growing in a mother’s womb during pregnancy, there are two small openings between the left and right sides of the heart: the patent ductus arteriosus and the patent foramen ovale. Normally, these openings will close a few days after birth.
In babies with hypoplastic left heart syndrome, the left side of the heart cannot pump oxygen-rich blood to the body properly. During the first few days of life for a baby with hypoplastic left heart syndrome, the oxygen-rich blood bypasses the poorly functioning left side of the heart through the patent ductus arteriosus and the patent foramen ovale. The right side of the heart then pumps blood to both the lungs and the rest of the body. However, among babies with hypoplastic left heart syndrome, when these openings close, it becomes hard for oxygen-rich blood to get to the rest of the body.
At first, we haven’t shared this with many people and honestly it was because we got asked a lot of question that we didn’t have the answers to at the time and there are those they tend to not think before they talk.
This pregnancy has been very different from the other 3. From the start, we’ve been told numerous things are “wrong” with our baby girl. I think I’ve dealt with every emotion at the same time since finding out we were pregnant. The reason for not sharing our news with everyone is because I let fear control me. The fear that she was not going to make it was very overwhelming. At 16 weeks, we received news that our baby had a heart defect and it was later confirmed at 20 weeks that the left ventricular of her heart was severely under developed. We’ve met with several specialists and go weekly to monitor our sweet girls heart. Our sweet girl will require open heart surgery after birth and the plan is to have her at Shands Hospital in Gainesville, Florida where she will be prepped for surgery right after delivery. Our prayer request is that she continues to be a fighter, that the delivery goes smoothly, for the doctors, nurses and surgeons that will be caring for our baby, and for our family as a whole. Our other 3 kids our worried but are just happy kids as they should be ;). We appreciate all your thoughts and prayers! Her name is Evelyn Grace and she is already so very loved by us and others. One of the verses that keeps popping up as we’ve been on this journey is Isaiah 43:2. “Although at times it’s all hard to process, I feel His presence and I know I am not going in this alone.”
Again, THANK YOU so much for your donations!
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