I wrote a big post and the BlogPress crashed. Let's see if I actually get to post it this time.
We're on the train home. I got bumped into first class but dh is still in economy. In some ways this is good as it gives me some time to think.
Baby Finn has a very serious heart condition. He has hypoplastic left heart syndrome, which means that the left side of his heart that usually does a lot of work in pumping blood to the body is underdeveloped. While he is in utero the system he has works okay because the fetal circulation ensures blood can get to all the body parts. There is an extra little opening that closes within the first couple of days after birth. Once this closes Finn would become very ill as his heart would no longer be pumping blood to the body. They can give medication to keep this open temporarily but he would basically need open heart surgery within days of life. This would involve a 3-4 week stay at GOSH intensive care. This is to buy time, he would then need 2 further operations one at 4 months and another at 2-3 years. If he gets through all 3 (chance of around 60%) Finn would be able to live a relatively normal childhood and be able to go to school but would tire easily. Long term prognosis is unknown past childhood/adolescence as the surgery involved (Norwood procedure) has only been around since the 1990s. It is possible at some point he may need a heart transplant.
So we have 3 options. Continue with the pregnancy and go the surgery route. (There is a chance further complications may arise later in the pregnancy making surgery non viable. But right now he appears a good candidate.) 2nd is continue with the pregnancy but let nature take it's course. Finn will not survive more than a few days this way. Or we decide this is too much strain on our family and opt to terminate the pregnancy within the next week or so. We have not decided which route we will go down for sure. I want to give Finn the best chance I can at life but I am also worried about the impact on my other children. So we have lots of soul searching to do.
We really appreciate all the love and support we have been given xxx
- Posted using BlogPress from my iPhone
So sorry to hear you have such a soul-wrenching decision ahead of you. Hugs and peace as you and your family decide what is right for you.
ReplyDeleteWe are thinking of/praying for your families during this time and sending thoughts of peace as you make this decision for what is best for your family.
ReplyDelete~ MarfMom
I cannot imagine the pain you and your family are in. I support whatever decision you make. Sending Strength and Courage to you and your family.
ReplyDeleteMy name is Jenny and my daughter Aly is 1 and has HLHS. I'm so sorry to hear about your diagnosis but I want to tell you that there is hope! My Aly is a completely normal one year old girl. I don't know what hospital you were diagnosed at but the success rate at U of M (where we go) is more like upwards of 80%. The first surgery is the riskiest (at about 75-80% success) and the second two are in the 90th percentile. There are MANY hospitals out there that treat HLHS, some more successfully then others. If you have any questions, please feel free to contact me. We will keep your family in our thoughts and prayers as you make this difficult decision.
ReplyDeleteHave you ever read MckMama's blog? About little Stellan who they found out had a VERY rare heart condition in utero. Please feel free to check out her blog. Maybe her blog and Stellan's story can give you some hope!
ReplyDeletewww.mycharmingkids.net