it's happened again!
After Owain's CDH repair surgery at seventeen days old. Learning that his surgeon had to use a gore tex patch because he was missing 90% of his diaphragm on the left side. We hoped he wouldn't need a patch. We new if he needed a patch his chances of having a reherniatoin were higher. Leaving the NICU with our sweet little warrior (44 days old) that has been my biggest fear.We just got off the phone with his surgeon and it has happened again. Owain has had a recurrence for the third time! This will be his fourth surgery. I was hoping that the results of his CT scan wouldn't be this. I hate that our little man is going to have to endure another surgery. another hospital stay. With any surgery their are always complications. We learned that with his first repair surgery when his spleen bleed to death and he nearly died. The difference now is he is a happy go lucky little boy. Looking at him you wouldn't even know he had a recurrence. He is full of energy,eating pretty good for Owain and is having no trouble breathing. Those are all really good signs.He is no where close to being in critical condition. We are thankful.
The game plan for now is Dr.Z (surgeon) is going to have a meeting with other surgeons.Hoping to come up with a better plan. The gore tex is not working for our little man. He has three gore tex patches and still managed to have a reherniatoin three times! He is not happy that this is happening again. Neither are we. Owain is his first CDH patient that has had a recurrence. Leave it to my little man to be a challenge.So mow we wait until Tuesday or Wednesday to hear what the next game plan will be.In the mean time we will be laying low.No more story time,play dates,trips to the indoor play ground. We need to keep Owain from getting sick. Our plan for tonight we will be having some quality family time with a movie and pop corn.
Thank you to every one who has left a comment here or on Face book. It really has been up lifting to read them.
If you are a parent of child with CDH and they needed a patch.
What type of patch was used?
Did your child have any recurrence?
The game plan for now is Dr.Z (surgeon) is going to have a meeting with other surgeons.Hoping to come up with a better plan. The gore tex is not working for our little man. He has three gore tex patches and still managed to have a reherniatoin three times! He is not happy that this is happening again. Neither are we. Owain is his first CDH patient that has had a recurrence. Leave it to my little man to be a challenge.So mow we wait until Tuesday or Wednesday to hear what the next game plan will be.In the mean time we will be laying low.No more story time,play dates,trips to the indoor play ground. We need to keep Owain from getting sick. Our plan for tonight we will be having some quality family time with a movie and pop corn.
Thank you to every one who has left a comment here or on Face book. It really has been up lifting to read them.
If you are a parent of child with CDH and they needed a patch.
What type of patch was used?
Did your child have any recurrence?
Amber,
I am truly sorry, my heart goes out to all of you!!!!
Jaime's first repair was at 23 days old in May 2009-he spent 93 days in the NICU. He also has a Gore-Tex patch and has no diaphragm at all on the right side. He had his second repair surgery at 194 days old (just over 6 mos. old, but the re-herniation occurred one month prior-Sept. 2009-it was misdiagnosed...long story.) Anyway, Jaime, too, was the surgeon's first re-herniation. What he did was pulled everything (liver, intestines, kidney) back down to their "normal" spots, repaired the torn patch and added a second larger patch that went completely over the first and wrapped around his right rib cage. Sounds crazy, I know! I'm TERRIFIED that he will re-herniate again! Not so sure about these Gore-Tex patches. That's our gruesome story!
Soooo hoping the surgeons come up with a plan for Owain that will last him a lifetime!
Again...many prayers coming your way!
Hugs,
Sheryl
So sorry to hear you all are going through this again!! Owain has followed Sofie's course almost to a T. She was also missing 90% of her left diaphragm. They used an alloderm patch. AT 4 mos of age the patch tore a hole through the middle, so they did a primary closure of the patch. 2 days later, she reherniated for the 2nd time. My theory is that by doing the primary closure of the hole in the patch, it created too much tension around the edges and it tore away at the posteriolateral edge and in toward the mediastinum. That 2nd reherniation went undiagnosed for 4 months (long story) but at 8 mos of age was repaired (3rd surgery) laproscopically. They put another piece of patch over to reinforce it and sewed it around her ribs. They also used glue to double reinforce the sutures. At 13 months she reherniated for the 3rd time. For her 4th repair surgery they did a latissimus dorsi flap repair and so far (knock on wood) that has held well. It isn't done often, but does have a high success rate when it's been done. Email me if you have any questions. Best wishes and many prayers for Owain!!
Jen
jen@sofiascdhstory.com
:-( So sorry to hear this! Your family will be in our thoughts and prayers. Charlie's surgeon did have to use a gortex patch - there was not much getting around it because most of the back half was missing. So far, so good - knock on wood! Take care of yourself!
Much love, Patty D'Angelo
Hi Amber,
I am so sorry that you guys are going through this again. Owen didn't have a gortex patch and hasn't reherniated. I think surgery in general seems to get harder on the kiddos (mentally) as they get older and understand what's happening. Owen's surgery this summer was very traumatic for him, he was not quite 2 1/2 so just a bit older than Owain. I don't really know what we could have done different, but even now 6 months later I constantly have to reassure him when we go somewhere that he isn't going to get hurt.
I will keep you guys in my thoughts and prayers. I was going to suggest getting in touch with Sofia's mom Jen but I see she has already left a post...
Anyways, thinking of you guys as you go through this again.
darcy
I still can't believe you are going through this again. Poor little guy. Carter didn't have a patch repair, but his surgeon used his abdominal muscle to create a diaphragm (which is why Carter has a pooch on his left side), so I can't give you any answers on patches and reherniations. Maybe Owain's surgeon could look into using the ab muscle this time??
Good luck and we'll be checking in.
-Kellie