We met our pediatric cardiologist on August 3, 2010. She performed a fetal echo cardiogram and followed up on the diagnosis we were given prior to this day. Sure enough, the words hypoplastic left heart syndrome came rolling off her tongue! She drew us diagrams of a normal heart vs an HLHS heart, and explained how each worked. She also drew us diagrams of how this condition will be fixed. The first open heart surgery is called the Norwood. This surgery will be done 3-5 days after delivery. The 2nd surgery is called the hemi-fontan aka the Glenn Shunt procedure. Depending on the baby, this surgery will be performed between ages 4-8 months. The last procedure is called the Fontan procedure, and this is usually done between ages 18-24 months of age. After all 3 surgeries are performed, there is still a possible chance of the child having a heart transplant in it's later years.
The pediatric cardiologist definitely shed some light us on, and gave us more hope than what the doctor had given us. She sounded pretty confident in the CV surgeon and the team here at St. Vincent. Of course I did my own research and found out that this hospital has the 3rd lowest mortality rate in the entire nation! That seems like a really good outcome for the patients! I was also told from other HLHS families that the CV surgeon at the children's hospital is one of the best in the nation. Can't wait to meet him! :)
We are scheduled for a follow up echo cardiogram because our baby likes to hide his heart from the professionals, so the cardiologist wants to try and get one last echo in before he gets too big!
Hi,
ReplyDeleteOur son Andrew is 2 years old and has all 3 of his surgeries under his belt for HLHS. We first found out we we're having twins and then at the 5 month ultrasound we discovered Andrew's heart defect. It is a really scary situation to be in but we've kept strong in our faith and millions and trillions of prayers helped us through. Andrew also developed a A/V block after his fontan and had to go back to have a pace maker put in but after all that we've been through I wouldn't change a thing! He is the happiest, most loving little boy! You have a long road ahead of you and it is terrible to see your little baby going through all of this but you have to stay strong, say lots of prayers and remember the alternative to all of this... it's so worth it! Good luck and lots of prayers are being said for your family.
Heart Hugs,
Jenny
Hello! My daughter, Aly, is 13 months old and also has HLHS. She has 2 surgeries out of 3 completed and has done really well. I wanted to introduce myself to you as your newest "follower" :) Also, I see that your sons treatment will be in Indianapolis... here is the blog of a heart friend of ours who is also being treated there (I think it's the same hospital) Her son is due in the next week! http://fierceandfiesty.blogspot.com/
ReplyDeleteWe will keep your family in our thoughts and prayers!
Heart hugs,
Jenny
http://jennyandjeremylincoln.blogspot.com