Being told your baby is likely to be born with OA/TOF will no doubt have come as a shock to you. But we are here to help. Join TOFS now for support as you await the birth of your precious baby.
TOFS is the UK’s charity offering lifelong support for those born with, or affected by OA/TOF.
For forty years we have been helping families through the challenges of bringing up a child with OA/TOF, VACTERL and associated conditions.
We do this by providing one-to-one support, and a range of information (including a comprehensive medical book) and resources to families. We also run a private Facebook group where parents and carers of OA/TOF children, their families, and adults born with the condition can discuss the problems they face and gain support from each other.
If you need support and would like to speak to someone please click here.
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Oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF) are quite rare and affect around 1 in 3,500 babies. Despite advances in ultrasound technology, the diagnosis is made before birth in less than 20% of cases.
The fetus swallows amniotic fluid which fills the stomach. This fluid is what makes the stomach visible on the ultrasound scan. If the baby isn’t swallowing fluid, for example because of oesophageal atresia, the stomach will not fill and will not then be visible. Oesophageal atresia is therefore suspected when the fetal stomach is not seen on ultrasound.
In addition, oesophageal atresia is usually associated with a tracheo-oesophageal fistula (TOF); amniotic fluid can enter the stomach through the TOF, meaning that it fills with fluid even if it does not go down the oesophagus. This gives the appearance of a normal scan.
A second possible feature visible on scans arises from the fact that the upper pouch of the oesophagus in the neck (above the atresia) is usually enlarged. Sometimes a dilated upper pouch can be seen on ultrasound, but this is quite difficult to visualise and relies on the baby swallowing at the time of the scan to distend the oesophagus.
“The pregnancy was going well; we had our 20 week scan at our local hospital, everything looked great and we went away incredibly excited.
Later on, I was concerned that I wasn’t feeling the baby moving very much and went to be checked over. The midwife remarked that I looked quite big for my dates. At a scan the next day they told us that I had polyhydramnios and it was highly probable that our baby would be born with something called oesophageal atresia (OA) as there was no obvious stomach bubble to be seen.
We were immediately referred to another hospital, where the specialists confirmed that our baby was unable to swallow. Even now I still shudder remembering how we were ushered into ‘that room’ where you are always taken to discuss the fate of your unborn child.
Though the content of that meeting is a blur, I can recall how we met with a surgeon who explained that when our baby was born it would face lifesaving surgery and an uncertain future. There was no way of knowing the severity of the condition or eventual prognosis. The surgeon also warned that there might also be other problems, drawing a series of diagrams and using acronyms like TOF, OA and VACTERL. He was very matter-of-fact.
We tried to take it all in, but it was a huge shock and we were obviously devastated. One of his assistants gave us a TOFS flyer; we returned home that night in a daze, but determined to understand what we might expect.
From that point on, we used the TOFS website and started reading up on the condition. We also ordered the TOF book to find out what might or might not come to be. It was a worrying time, but we tried to remain positive and focus on practical tasks.”
Join TOFS and be a part of the largest community of parents, careers and those born with OA/TOFs in the world. Find out more…
From early in pregnancy, the fetus makes amniotic fluid, some of which comes from the baby’s urine. Fetuses swallow amniotic fluid from around 16 weeks gestation. If the baby is unable to swallow due to an oesophageal atresia, the volume of amniotic fluid in the womb will increase. This is called polyhydramnios.
It usually takes several weeks for the extra fluid to develop so at the time of the 18-21 week scan the amniotic fluid will often appear to be in the normal range. The mother may feel her uterus becoming more swollen or sometimes even tense.
Midwives may notice the uterus appears larger than expected for that stage in the pregnancy (large for dates). This may trigger a late scan to check the baby’s growth, anatomy and amniotic fluid. This is often the first time in the pregnancy when a suspicion of a problem such as oesophageal atresia is raised. There are various possible causes of polyhydramnios, including gestational diabetes and rare infections as well as structural problems that affect swallowing, but often there is no underlying reason.
If a woman’s uterus becomes very tight from polyhydramnios she may become uncomfortable and feel the uterus tightening or contracting. Sometimes it becomes necessary to drain some of the fluid to reduce the risk of early labour.
Around half of all babies with oesophageal atresia have other congenital abnormalities. If the fetal stomach cannot be seen on serial scans, the mother will usually be referred to a fetal medicine unit for further assessment.
Further scans are performed specifically aiming to determine why the fetal stomach cannot be seen (is it smaller than expected? empty? on the wrong side of the fetal abdomen?) and whether there are any other structural problems, including those of VACTERL association.
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.
