Hello, my name is Pinar Batur. I have a beautiful daughter called Leyla who was born with a condition called Tracheo-Oesophageal Fistula and Oesophageal Artesia (TOF/OA). The first time that I have ever heard of this condition was straight after the birth of my daughter.
Leyla was born by emergency C-section on 28 July 2017, weighing only 2.35kg (5.18 pounds). She was immediately taken away by the paediatricians to send a NG tube down her throat. The NG tube had failed to go all the way down to her stomach because the top part of Leyla’s food pipe was not connected to the bottom part of her food pipe.
While I was waiting for my husband to return to the delivery room together with our baby, he walked in with a paediatrician. It was clear from my husband’s face that something was not right.
The doctors had explained my daughter’s condition and that she will need to be operated on immediately to correct her food pipe. We had been explained that if the gap between the two tubes were short, they would be able to connect it immediately, if however, it was a long gap, Leyla would need to stay in the hospital for at least 3 months so that she can grow under supervision, consequently her food pipe would also grow, hence then they would be able to connect the bottom and top part of her food pipe. In the meantime, Leyla would have a tube inserted in her stomach to be fed. They further explained that they could only tell if she was a short or long gap TOF/OA only when they open her up and not through a scan, so we were pretty much told to be prepared for her food pipe not being corrected following the operation.
Leyla had her operation when she was 3 days old. The procedure lasted for 5 hours. I think it was the longest 5 hours of my life. Both my husband and I were trying to be as positive as we possibly could, however it was a condition that we had never heard of before. Throughout my pregnancy we were told that we were going to have a healthy little girl, so we were both trying to deal with the shock of all the information that were being thrown at us. We were told of all the possible risks of the operation, however, it was not the kind of operation where one could say, ‘oh I don’t think it is worth the risk, so I don’t think the operation should go ahead’, regardless of the risks, the operation had to go ahead.
Luckily Leyla was a short gap, hence they had corrected her food pipe, and she was ready to go home when she was 1 month old.
Our 1 month in the hospital had ups and down and Leyla had to have further minor procedures following her discharge. We understand that this is a condition that we must learn to live with. We understand that there may be certain foods that Leyla may not be able to eat, she will probably need to get into the habit of taking her time while eating and chewing her food more than the average person, or she may have no problems at all. This is something that we will find out in time.
I have decided to set up this blog to share our experience with Leyla in the hope of bringing awareness of TOF/OA and inspiring families with or without babies with a rare condition. Before Leyla was discharged from the hospital, her surgeon had said to me ‘mummy, Leyla is a normal baby, so let her be normal’. My husband and I are doing all that we possibly can to ensure that Leyla has a normal and happy childhood and life.
The Mum World 