Before our daughter Roux was born, we had never heard of TOF/OA. It’s a condition that affects just one in 5000 babies. TOF/OA is where the baby is born unable to swallow. The lower part of the oesophagus that leads to the stomach is connected to the windpipe and the upper part has a blunt ending. This meant that in the womb, Roux couldn’t swallow the amniotic fluid which lead to her being born a tiny 3lb 8oz at 34 weeks
After she was born, Roux needed resuscitation as she was choking on her own saliva and because her stomach was connected to her windpipe, as she was breathing she was pumping air into her stomach.
As the condition is specialist, we had to be taken to neonatal intensive care at Leicester Royal Infirmary the day she was born and told she needed surgery within 24hrs. As Roux was underweight and fragile, and the operation is very intricate, we had to wait until after the weekend. In that time she had a nurse with her 24/7 who cleared her replogle tube every 10 minutes around the clock. We weren’t able to hold her for a while or without help due to her being connected to the machines and she was fed through tubes. She had her op at 3 days old.
Everything went well & Roux recovered quicker than the doctors ever expected & we got to bring her home just in time for Christmas at 2 weeks old. She was assisted with oxygen for just 24hrs and every day kept getting better.
There are a lot of other things that come with TOF that Roux has including GORD, vomiting, struggling with foods, heart problems along with others that luckily Roux doesn’t have. It has been challenging since bringing her home. She can’t eat like other children her age, she is still on more pureed food than solid, has had many choking episodes and has had infections. She has to take medications everyday, has regular check ups at LRI and will likely still need help as she gets older.
Despite all of this, Roux is the most beautiful & happy little girl. She has come so far in
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