The following is an email I sent out to family after we confirmed some findings about the baby:
We got some news about the baby that I wanted to share. On Monday, at my 20-week ultrasound, they found an abnormality with the baby's heart. Everything else is fine. He's growing right on schedule and looks anatomically sound in every other way. My doctor wouldn't tell me anything too specific about his heart other than it appears that the left side is underdeveloped. This ultrasound was "meant to be a screen" to discover any possible concerns that needed a closer look. He sent us to a fetal medicine specialist, whom we saw today.
She confirmed that the baby's left side is very underdeveloped. She said it looks like a complex condition called hypoplastic left heart syndrome. We're going to another specialist next week at primary children's hospital to have an in-depth echocardiogram and an even more intense look at the baby's heart. They will be able to tell us definitively what we're dealing with and what we can expect moving forward. The specialist today said that this is either fixable or not. By fixable, it will require multiple open heart surgeries within the first couple years of life. If the heart is too weak or has too many restrictions, no surgery can be done other than a heart transplant.
I am now considered a high risk pregnancy and will transfer my prenatal care to a specialist. I will need to deliver at hospital that is much farther away than our local one so the baby can have the care he needs right away. The first heart surgery for this condition is usually only a couple days after birth. My husband and I talked about a name we really like, and decided on it. The name we chose means "gift from God" and "little warrior". It seems to suit this little guy, who will be born with instant challenges and who will need to be brave and strong.
We love him, and are so grateful that Heavenly Father had trusted us with this precious baby and the great responsibility that is required of this situation. He is being sent to us because we are the best family, and I am the best mother capable of taking care of him. Please pray for me that I can have the strength and the perspective needed, and that i can have unabiding faith in the will of our merciful and loving Creator.
It also wouldn't hurt to pray for some miraculous healing, that the baby's heart can grow and develop properly over the next 18 weeks, and that by the time he's born he won't have these health concerns. Long shot, maybe, but always worth a try.
We know that the Savior is the master healer and physician, and that by faith He can make things whole. Either way, we will love this baby and do our best to follow the guidance of the spirit while searching for the most excellent medical care; and we will seek peace in the plan that God has for us and this baby. We have been blessed with 5 beautiful healthy children who will fiercely love, serve, care for their new brother. He couldn't be coming to a more loving family.
I put this in an email because i didn't feel like telling everyone individually. It was a simple way to explain things concisely without getting too emotional. We're sad about this, but feel okay. As mom would say, "it is what it is." So the best thing we can do is become educated about the situation, have faith, and put our best foot forward.
Much love.
P.S. Here are some articles on Hypoplastic Left Heart Syndrome (HLHS) that the specialist provided us today:
https://www.cincinnatichildrens.org/health/h/hlhs
http://www.chop.edu/conditions-diseases/hypoplastic-left-heart-syndrome-hlhs
P.P.S. These are "hope" stories I found on the littlehearts.org website. Scroll down to the HLHS section and read personal stories of children (and adults) who have grown and thrived despite HLHS. It's more uplifting than the doctors literature from the last email.
https://www.littlehearts.org/StoriesOfHope/Default.asp
From what I've read, when you have a HLHS child WITHOUT any other health concerns (which is the case with our baby), their long-term survival rate is significantly greater than those babies that may have other physical/development concerns aside from HLHS. All require surgery, but when HLHS is an isolated finding, these children have survived and done much better with an 80%+ survival rate.
We got some news about the baby that I wanted to share. On Monday, at my 20-week ultrasound, they found an abnormality with the baby's heart. Everything else is fine. He's growing right on schedule and looks anatomically sound in every other way. My doctor wouldn't tell me anything too specific about his heart other than it appears that the left side is underdeveloped. This ultrasound was "meant to be a screen" to discover any possible concerns that needed a closer look. He sent us to a fetal medicine specialist, whom we saw today.
She confirmed that the baby's left side is very underdeveloped. She said it looks like a complex condition called hypoplastic left heart syndrome. We're going to another specialist next week at primary children's hospital to have an in-depth echocardiogram and an even more intense look at the baby's heart. They will be able to tell us definitively what we're dealing with and what we can expect moving forward. The specialist today said that this is either fixable or not. By fixable, it will require multiple open heart surgeries within the first couple years of life. If the heart is too weak or has too many restrictions, no surgery can be done other than a heart transplant.
I am now considered a high risk pregnancy and will transfer my prenatal care to a specialist. I will need to deliver at hospital that is much farther away than our local one so the baby can have the care he needs right away. The first heart surgery for this condition is usually only a couple days after birth. My husband and I talked about a name we really like, and decided on it. The name we chose means "gift from God" and "little warrior". It seems to suit this little guy, who will be born with instant challenges and who will need to be brave and strong.
We love him, and are so grateful that Heavenly Father had trusted us with this precious baby and the great responsibility that is required of this situation. He is being sent to us because we are the best family, and I am the best mother capable of taking care of him. Please pray for me that I can have the strength and the perspective needed, and that i can have unabiding faith in the will of our merciful and loving Creator.
It also wouldn't hurt to pray for some miraculous healing, that the baby's heart can grow and develop properly over the next 18 weeks, and that by the time he's born he won't have these health concerns. Long shot, maybe, but always worth a try.
We know that the Savior is the master healer and physician, and that by faith He can make things whole. Either way, we will love this baby and do our best to follow the guidance of the spirit while searching for the most excellent medical care; and we will seek peace in the plan that God has for us and this baby. We have been blessed with 5 beautiful healthy children who will fiercely love, serve, care for their new brother. He couldn't be coming to a more loving family.
I put this in an email because i didn't feel like telling everyone individually. It was a simple way to explain things concisely without getting too emotional. We're sad about this, but feel okay. As mom would say, "it is what it is." So the best thing we can do is become educated about the situation, have faith, and put our best foot forward.
Much love.
P.S. Here are some articles on Hypoplastic Left Heart Syndrome (HLHS) that the specialist provided us today:
https://www.cincinnatichildrens.org/health/h/hlhs
http://www.chop.edu/conditions-diseases/hypoplastic-left-heart-syndrome-hlhs
P.P.S. These are "hope" stories I found on the littlehearts.org website. Scroll down to the HLHS section and read personal stories of children (and adults) who have grown and thrived despite HLHS. It's more uplifting than the doctors literature from the last email.
https://www.littlehearts.org/StoriesOfHope/Default.asp
From what I've read, when you have a HLHS child WITHOUT any other health concerns (which is the case with our baby), their long-term survival rate is significantly greater than those babies that may have other physical/development concerns aside from HLHS. All require surgery, but when HLHS is an isolated finding, these children have survived and done much better with an 80%+ survival rate.
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