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mommywilliams2b
member
Esophageal Atresia??
mommywilliams2b
member
Has anyone else dealt with this or are dealing with this? I am almost 32 weeks with twins and was told two weeks ago that it looked like Twin B has an Esophageal Atresia..she is going to need surgery just as soon as she is born to correct it. The thought of one of my babies having to have surgery is the most frightening thing I have ever had to deal with!
If anyone has gone through this I could really use some insight..There isn't much information about it online.
I am a mommy to three beautiful little girls.
A wife to the most amazing man I know.
&
A photographer who loves capturing memories.
A wife to the most amazing man I know.
&
A photographer who loves capturing memories.
This discussion has been closed.
Re: Esophageal Atresia??
My neice has this. She turns two in May. My SIL had placenta abrutio due to high amniotic levels, apparently the atresia had some effect on this, DN not being able to take in the fluid accounted for the higher pressure and the birth accident. Both DN and SIL were extremely lucky because the EMT's acted quickly and they were 10 min from the high risk maternity center. She had the first corrective surgery at a few days, and has continued to have corrective surgery as she grows, and to expand the diameter of her esophagus.
She has a g-tube for feeding still, but she now can eat purees, and foods that dissolve easily, like puffs, Mum Mum crackers and yogurt puffs. She may have been able to try other foods sooner, but she's been working with OT for oral aversion and she also has mild CP from the birth accident.
It's good to see you're very aware of your lo's condition, there are lots out there with good outcomes (my bro told me about a few they met with this week at support group). Good luck and H&H rest of your pregnancy.
Not espohageal, but my little girl had duodenal atresia (as well as a heart defect, and she has Down syndrome.) She did require surgery at birth to correct the duodenal atresia. She was home 3 weeks later, and she has never been tube fed, although I understand we're pretty lucky for that! She's actually quite an eater at 11 months - her favorite food is chicken curry!
I have NO idea how to do personal messages on here, but you can reach me via my blog or email me at megan landmeier at gmail dot com. I'd be happy to share our experience.
Yes. DS1 was born with EA/TEF. Here is a link to the FB page for many, many contacts!!
EA/TEF Family Support Connection
Where are you located? If you are west coast, I would HIGHLY recommend Lucile Packard Children's Hospital at Stanford University in Palo Alto, CA. DS1 was treated there. Had his primary repair done at 2 days old. We've had NO issues, no dilations, no NOTHING wrong since the repair. (Dilations are necessary when the scar tissue builds up at the connection point and forms a partial blockage of the esophagus). DS1's surgery was performed by Dr. Craig Albanese.
If you are east coast, there is also EA/TEF treatement center at Children's Hospital Boston. Once you figure out what type (Type A, B, C or H) your LO has, you have a better idea of what kid of treatment you need. If she has long gap (Type A) I would highly recommend that you get to CHB and be treated by Dr. Rusty Jennings and his team with the Foker method. It is highly successful.
Many, MANY of our kids have botched or failed surgeries which lead parents to frantically search for better options. You are "lucky" in that you got a prenatal diagnosis. Only 1/3 of us get prenatal diagnoses.
I would start in on the insurance companies and your doctors NOW. Fight like HELL to get transferred and have the surgery done by someone who has the stamp of approval from fellow EA/TEF parents.
Take some of the stories on the FB pages with a grain of salt. There are many people at different points in their journeys. It can get really scary. We've recently lost a few babies as well. It is very serious stuff, so do your research and find the best surgical team for your daughter.
I have twins as well. My daughter Twin B was also born with TEF/EA. I was terrified at first but everything went pretty smoothly. She was taken to the Children's hospital a few hours after birth, which was difficult, having one twin with me at the hospital and my husband with the other twin at another hospital. She had her tef repair at 2 days old and came through It like a champ. We had issues with feeding, she had (has) reflux due to the defect but other than that she was pretty much like any other child. She never needed a feeding tube. She was fed via TPN in the NICU and she never needed esophogeal dialations!!!!! She is now 3 and is fine! She gets food stuck every now and then but is able to push it down with water or bring it back up with no issues. IF I could change one thing It would be to go back and not worry as much!!!! They will also check your baby for other birth defects that can be associated with TEF....IT's called VACTERL asscociation. My daugher has a few managable heart defects....both her kidneys are on one side fused, she had intestinal malrotation that was repaired.. Your baby might also have junky breathing because of a floppy trachea..It's called tracheamalacia (sp.) IT sounds worse than It Is In most cases. My advice Is to take it one day at a time. Every child with this birth defect Is different!
You can add me on facebook If you want ( Mandy Hill-Bailey)...I have pics of when Emma was in the hospital and what she looks like now.