Nurturing Through Challenges: Breastfeeding a Baby with TOF

Thank you to NHS midwife, homebirth advocate and mum of 5, Claire, who writes about her experience of breastfeeding her baby with TOF (tracheo-oesophageal fistula).

So, I was a lucky first time breast feeder. My first daughter was born at home, fed and I wondered what all the fuss was about. Put them to the breast and they feed… right? She self weaned at 12 months and it was an easy ride (as it can be with your first time being a new parent!).

My subsequent 4 children taught me that easy breast feeding isn't the case all the time and can be complex, heartbreaking and often out of your control. But, with excellent support (which I had) you can still make feeding work for you regardless of how you choose to feed your baby.

My second daughter was born at home 8 years after my first. I had an uncomplicated pregnancy and lovely birth. She seemed fine at first. She had a few big vomits and we assumed she was clearing mucus.... it was only when I breastfed her for the first time that we realised there was a problem. Whilst feeding her she started to choke and became floppy and grey.... we transferred to hospital by ambulance. Whilst waiting my midwife suctioned her throat and she became pink again. By the time we got to hospital she was pink and well! They observed her for 12 hours, decided she was fine and let me feed her again... she collapsed again.

Florence at birth (photo above)

What came after was a whirlwind of tests, X-rays and transfers from our local hospital to a neonatal surgery unit as our daughter was diagnosed with TOF/OA. Basically, her food and wind pipe weren't plumbed correctly! Any milk she drank ended up in her lungs so she needed surgery.

Florence after surgery (photo above)

It was a really frightening and unexpected situation for all of us. She sailed through surgery and the only thing I could do whilst she recovered was pump milk for when she was well enough to feed orally (which she couldn't for about a week). I pumped a lot, so much so I ended up with an over supply issue! But, we had a stash of milk that the nurses gave her through a tube after her surgery.

Claire & Florence’s first “plumbed-in breastfeed” (photo above)

5 days after surgery I was encouraged to try breastfeeding... she did so well that all feeds via a tube were stopped after 2 days and we got discharged 2 days later as she was putting on so much weight!

Florence (pictured above) is now almost 9, has no difficulties from her difficult start and breastfed until she was 18 months old.