Hearing that your baby has OA/TOF can be very alarming for parents. The first thing to understand is that you have done nothing wrong. We don’t fully understand the cause of OA/TOF but we do know it is nothing to do with anything the mother or father have or have not done during the pregnancy.
TOFS was established by people in exactly the same situation as you are now – parents of babies with born with OA/TOF. We are here to support you and your baby.
Join TOFS today.
OA/TOF babies need surgery within the first few days of life.
Your baby will first be checked to ensure that there are no other problems which might affect their ability to undergo surgery. When it comes to the operation, the surgeon aims to close the connection between the oesophagus and the trachea (the TOF) and then join the two ends of the oesophagus (the OA).
If your baby has not been born at a specialist hospital, they will be transferred and if you are fit to be discharged from your local hospital you may be able to go there along with, or soon after, your baby.
There is a possibility that you may not be able to sleep at the specialist centre initially. If you are unable to be transferred with your baby, the father, or a close relative may be able to go along with the baby and keep you informed.
Although things are hard at the beginning they do get better.
This is my amazing 10 year old son Kian, who was born with OA/TOF. The first few years were really hard and I’ve lost count of the hospital admissions he has had.
Kian has just completed a 5k run in under 30 minutes! To say we are proud is an understatement. We never thought he would be able to achieve anything like this.
Repair of OA/TOF involves an operation on the chest to divide the fistula and then repair of the atresia. This operation is performed by a paediatric surgeon. Your baby will be in theatre under a general anaesthetic with an experienced paediatric anaesthetist continuously monitoring the baby’s vital signs; heart rate, ECG (the electrical activity in the heart), blood pressure, oxygen saturation (the oxygen-carrying capacity of the blood) and body temperature.
In most cases, a primary anastomosis (or primary repair of OA) is possible, ie, the two ends can be joined up immediately. The aim is to repair the oesophagus with as little tension as possible at the site of the join.
Sometimes, the gap in the oesophagus is too great to close. This is known as long gap OA. If this is the case, the surgeon will divide the fistula and place a gastrostomy tube into your baby’s stomach for feeding. The oesophagus may grow so that it can be joined later, or an alternative way of repairing the gap will be used.
After the operation, the surgeon will report back to you.
If tension at the anastomosis is high, (i.e. it is a tight join), it is standard practice to protect the repair by keeping the baby sedated and paralysed (using anaesthetic medications) and ventilated (using a machine to breathe for the baby) for five to seven days after surgery.
If the anastomosis was made with minimal tension, the baby will usually be woken soon after the procedure and returned to the neonatal intensive care unit (NICU) breathing on their own.
The special unit where babies are cared for after surgery can be unnerving to many parents. Other very sick babies will be on the ward and there is a lot of medical equipment, which can initially be very frightening. You will be encouraged to touch your baby and they will be reassured from hearing your voice as you speak to them.
The nurse responsible for your baby will explain to you what all the tubes and leads are for, and you should soon become more comfortable with the environment.
As progress is made, less monitoring will be required and you will become increasingly involved in your baby’s care.
TOFS has produced a resource for those who wish to feed their baby breastmilk.
This information has been produced by Registered Midwife, Kate Yardley and is endorsed by the National Neonatal Surgical Interest Group and the Neonatal Nurses Association.
How you choose to feed your baby and what works best for you both is a unique choice for all mothers.
We hope that this guide will help to overcome the challenge that being born with OA/TOF poses if you choose to feed your baby breastmilk.
To be told that your baby has been born with a condition that requires immediate surgery is frightening. People react differently in such situations.
Support from those around you gives you the time and space to come to terms with things. Being aware of your feelings and communicating them to others will help too.
Having an unwell baby puts an extra strain on your life, but you – like many before you – will cope. TOFS can offer you contact with parents who have been through it all before, to lend a friendly ear and offer information and support. Join TOFS for free to be put in contact with our TLC local support network.
Friends and family will share your shock and concern, but may show this in different ways – or they may simply not know what to say or do.
Asking for what you want from them – be it time alone, someone to talk to, or perhaps some practical help – can be hard, but will be better for you, and in fact may help them to feel of some assistance at this difficult time.
Although there can be genetically inherited causes for OA/TOF, most babies with OA/TOF are an isolated case within a family and have not inherited the condition. This is an important fact for new parents to appreciate.
Very rarely, OA and TOF can feature as part of a more complex genetic condition.
The risk to future pregnancies is very small (between 1% and 3%). You can ask your GP to refer you to a genetic counsellor for further advice
Watch “The Causes of OA/TOF” with Dr Charles Shaw-Smith.
Watch “Causes of OA/TOF including the role of twins” with Dr Charles Shaw-Smith.
Sometimes TOF babies have additional problems, most commonly those described as ‘VACTERL’ – a group of anomalies that often occur together. The incidence of VACTERL is about 1 in 20,000 – 35,000 births.
Read more about VACTERL here.
Published by TOFS, The TOF Book is the must have guide for anyone affected by, or caring for someone with OA/TOF.
With contributions from medical experts, the TOF Book contains chapters on every aspect of OA/TOF and VACTERL condition, from infancy to adulthood all presented in an easy-to-understand format.
