Special Needs
Options
multiple birth defects
I was wondering if anyone here has heard of TEF....trachea esophgeal fistula? This is one of my twin girls' main defects. She had surgery at 2 days lso has VACTERL Sydrome. She has crossed fused ectopic left kidney , ASD&Pulmonary valve stenosis both heart defects and a few others..extra rib, sacral dimple....Anways, sometimes I feel so scared and overwhelmed! She is so small too, 9.5 LBS at 4 months old, he twin sister is pushing 14 LBS. I'm tired of everyone worying about her weight when I'm trying not too!
It would be really nice to talk to someone who knows something about this!!!!
This discussion has been closed.
Re: multiple birth defects
I posted this on the preemie board too but I would actually page her over on this board - I think she frequents it more.
You should page nanakwaz - her beautiful little boy Drake has VACTERL syndrome. I'm sure she can provide you with great information and support.
I'm here!
Wow, we do have a bit in common! My son was born 7/6/07 with VACTERL. He had some kind of a vertebral anomaly (still not really sure), imperforate anus, ASD & VSD, TEF, an opening in the wall shared by his esophagus and trachea (in addition to the TEF), a small left kidney and reflux in the right kidney, and only 2 fingers on his right hand and they are fused. It has been a tough and long road but we are definitely on the up-swing! Drake is almost 21 months and we are still doing esophageal dilations and we still deal with reflux. He has a tracheostomy and a g-tube (mic-key).
I can tell you that after everything my little guy has been through he is just a normal toddler and wants to do everything he should be doing at his age! DH and I are so proud of him and we enjoy every minute of every day!
Please let me know if you have any questions or if you just want to chat. I know that when Drake was born it would have been a great help to find someone to talk to! We were completely overwhelmed!
Hi ..thank you so much for getting back to me!!!! My twins were born on 11/21/08.....we knew there was someting wrong because prenatally they saw a small stomache,only 1 kidney....they checked her right away for TEF and they confirmed it...she was transfered to the children's hospital 2 hrs after her birth and had the surgery at 2 days old. She had type C tef/ea...we have to see a geneticist when she is 6 months...I have noticed a few things....She can't stand on her feet and can't really hold her head up. She is super tiny...they are all worried,but I'm trying hard not to. We are seeing a nephrologist in June and she has to be followed with echo's regarding her heart....I pray to God she won't need another surgery. We have struggled with reflux so much, she chokes,gags,has puked up blood! It is just so frustrating!!!
Did you know Drake was going to be born with defects? He is sooo cute!!! He sounds like such a strong little boy! Is he going to be tube fed for long...why is he tube fed....sorry my question mark button isn`t working!lol
We had no idea that there was anything wrong until Drake was born. It was quite a shock. He is still unable to swallow (very much, anyway) so he needs the tube until the dilations are done and he gets some feeding therapy. We try to get him in every few months for dilations and so far we are giving him water on a spoon and he licks chips and crackers just to get things working in his mouth. The stent that is taped to his face in the picture goes down his esophagus and out his g-tube site and is used to feed the balloon down for the dilations. Originally they used a much thinner stent because it was all that would fit! He also had esophageal atresia and they had to stretch it really far to attach it.
Did you start feeding your daughter orally right after her surgery? That astounds me! Ramsey (another mom on this board) also has a son that had a TEF (but not VACTERL) and she has been feeding him all along.
It is really interesting to me that only one of your twins was born with VACTERL. Have the doctors given you any explanation for that? Why are they sending you to a geneticist? Do they think there is a background connection? We were always told that there is no known cause but I would be interested to know what you are being told in Canada! Drake was always really small too (he is still only in the 5th percentile) but he is definitely growing. Try not to worry too much. I'm sure she'll get there.
Sorry if that was too many questions. You are only the second person I have found with similar issues!
We havn't had to have any dialations as of yet , I always have that in the back of my mind everytime She pukes or chokes!! Emma had type C ,short gap, the most common type. The surgery was very successful and she was able to start bottle feeding 5 days por surgery. The reflux became a problem after she was released, she was there from Nov 21st-Dec 12th...She can only have up to 4 oz at a time and is very small. Did you notice that your son was behind at all in developmental milestones..I have to admit that Emma is startubg to worry me abit.
Regarding only one twin having VACTERL, It goes hand in hand with TEF right? Tef isn't genetic, It's caused by something going wring when these parts are developing shortly after fertlilization...so I'm guessing she doesn't have it because she doesn't have TEF?. They checked Caitlyn out, they did an abdominal u/s and ecg and she checked out, plus she eats well and is ALOT bigger!!!! I'll put more pics on here some time soon....
We are told there is no known cause either....however I have joined a european group with people who have tef children and it seems Europe has a really high incidence of this!! My DH is from England..out of curiosity do you or dh have any European roots?
Emma isn't even on the percentiles..lol...the doc said if there was a line for the 1%, she would be on it....They are starting a TEF clinic here at our Chilren's hospital..I am relaly looking forward to It!!! I don't mind all the questions...I love talking about this because no one else really understands!!!!!!
I met a mom in my mom's group last nght whose daughter has VACTERL (sp?) and I thought of you guys!
Her daughter was a twin, and when she was born, she kept turning blue, so they took her to the NICU to try to intubate, and couldn't get it in- so the did an US and discovered that her esaphaugus (HTH do you spell that) wasn't connected. They opened her up right away to do surgery to try to connect it, but it was too far apart, so they put a g-tube in instead.
The poor thing was in the NICU for 6 months (she was born at 33 weeks and also had twin-to-twin transfusion so she had other issues as well). Anyway, she is 5 now, and is doing great- basically a totally normal kid!
Thanks very much!!!!!! It is such an unusual birth defect...well 1 in 5000, but It's very hard to find people close to you that have been affected!!!! I am so glad to hear success stories!!!! My daughter is a twin too, the other twin was born healthy and my little Emma has all these issues, but she is soo special and a little fighter!!!
congrats on your twins. i have twins also, one who was born perfectly heatlhy without any issues and the other with some of the vacterl syndrome anomalies, he has the vertebrae anomalies, asd and was born with an imperforated anus, no kidney problems, or TEF. my boys are so active, you would never even know that my son has had so many surgeries or that he was born with any defects (he's actually the feistier of the two).
kelly
Oh..congrats to you too!!! Aren't twins just a blast! Well most of the time LOL!!! It's funny because Emma is the feisty one too!!! The had to tie mittens on her hands in the NICU because she would try to pull all of her tubes out!!!
Just out of curiousity...what kind of Vertebrae anomolies does he have? Emma has a sacral dimple and I just can't help but feel that something isn't right.she can't put both feet on a surface flat and I feel a weird bone popping out at the base of her tailbone..she seems to be very curvy in her lower body too. Have or will they be doing anything about his ASD?
Thanks for replying:)
Hey...I definetely feel something is off and not right about Emma's tailbone area...I have a gut feeling that something isn't right! They havn't sent her for an MRI..but I believe they did an u/s of her spine because she looked very crooked and It was fine! Is Jake going to have any long term effects from his issues? What is a tethered chord? I feel that I don't get enough info!
Her ASD a month ago was moderate-medium..and they said it still sounds the same..she has an echo in 3 months to see what's up.
Why did they do the MRI?
Thanks:)
HI, they did the MRI of Jake's spine to check for tethered cord (part of the spinal cord becomes stuck to the vertebrae and doesn't allow the child to pinal cord to stretch which can cause problems with incontinence, walking etc.) A sacral dimple is sometimes indicitive of having a tethered cord and my son's surgeon said that they can't always see it on an ultrasound of the spine. I would probably ask about getting an MRI especially if you really feel like something is not right.
The only long term issues so far that we know of is keeping up with his bowel movements and making sure that he isn't eating anything that is too constipating for him. The vertebrae anomoalies, they tell me there are no long term issues regarding that. Another thing is he has only 1 large top front tooth where there should be two separate teeth but the dentist says then can take care of that when he's older.
It was my son's surgeon and his geneticist who wanted the MRI done.