My daughter’s TOF diagnosis – Samantha’s story

Poppy was born at full-term but it wasn't long before healthcare professionals realised she had Oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF). In this blog, her mum Samantha shares their experience.

My daughter Poppy was born after a very long and traumatic labour. She spent a few moments on my chest before being whisked away as she had stopped breathing.

A team worked on Poppy for around 20 minutes before she was breathing again. I thought that once they got her back the nightmare would be over. Little did I know it was just beginning.

Poppy’s dad, Drew, was allowed to give her the first bottle. Every time he tried though, the milk would come back out of her nose and mouth. It happened again when the midwife had a try, so she said she would take Poppy to get looked at to see if she had any mucus blocking her airways. In the meantime, I was taken into theatre to have my placenta removed.

After my surgery, I was told that Poppy still wasn’t feeding. The staff were trying different types of formula to see if any of them would work but to no avail. The midwife then noticed that Poppy didn’t seem to be able to hold her saliva in her mouth so said she would take her back to NICU for the doctors to take another look.

Hours dragged by. The midwife finally returned to tell me that Poppy would be transferred to the Royal London Hospital within the next hour.

Drew and I went down together to the NICU to find out what was going on with our daughter. The doctor told us that they had been unable to fit Poppy with an NG tube so had done an x-ray to figure out what the problem was. The x-ray revealed that she had Oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF).

OA is a rare birth defect that affects a baby's oesophagus. The upper part of the oesophagus doesn't connect with the lower oesophagus and stomach. It usually ends in a pouch, which means food can't reach the stomach.

TOF causes air to pass from the windpipe to the oesophagus and stomach, and stomach acid to pass into the lungs.

These defects mean the baby – our Poppy - won't be able to swallow safely, if at all.

These medical terms are so familiar to our family now but when we were told about them that day, we couldn’t remember what was said. My head was fuzzy from all the drugs from my operation and I was too tired to take any of it in. I was taken back to the ward whilst Drew stayed with Poppy until the transfer team arrived. He watched our baby be blue lighted off to another hospital, unsure of whether or not she’d make it.

The following day, I received a phone call to say Poppy was going to need to undergo a six hour operation to repair her oesophagus. The day passed very slowly and I felt utterly useless being so far away from her. I was on the same ward as all the new mums and I cried for hours as I watched the mothers bonding with their healthy newborns, unsure whether I’d even get the chance to hold mine again.

Drew stayed at Poppy’s hospital, waiting for the operation to be over. After eight painful hours, he called me to say the operation had gone well and a doctor was going to give us some more information. I immediately discharged myself from hospital so that I could go and join the rest of my family.

When I was reunited with Poppy in the NICU at the new hospital, I didn’t know what to expect. She looked very swollen in her incubator and was attached to a breathing tube for her mouth, trans-anastomotic tube (TAT) for her nose and had cannulas placed in both hands. You could hardly see Poppy through all the equipment.

The doctor told us that her operation had gone well but he was worried about whether the repair would hold because there wasn’t much space for it. We wouldn’t know anything until she woke up and could use her muscles. At that moment, she was attached to a ventilator and had been given something to relax her muscles. The doctor said they would need to wait a week before she could be woken up.

I felt like my heart couldn’t take much more. A whole week attached to a ventilator.

As the days went on, I sat vigil at Poppy’s side. On the seventh day, my world crashed down again when I was told they weren't ready to wake Poppy up. She just wasn’t strong enough to breathe on her on yet.

Over the next few days, we kept being hit with bad news. Poppy’s lungs kept collapsing and she needed another blood transfusion. All of these things meant that she would have to stay asleep.

On Day 18, Poppy was finally ready to be woken up. When I arrived at the hospital, she was already twitching and when I touched her foot she wiggled her toes as if waving at me. I was so happy that we were finally moving forward.

Three days later, as Poppy was almost fully awake, I was allowed to hold her for half an hour. It was truly magical. By Day 22 she was fully awake and her breathing tube could be removed and replaced with CPAP.

Before long, we were told that the repair had held and that we could feed Poppy tiny amounts of milk through her TAT tube. Poppy had a nasty cough which sounded like a smokers cough. We told the nurse who said everything was fine. She explained the cough is what they call the 'TOF cough' and it was caused by floppy windpipe.

As we got ready to go home, Drew and I had to do a resuscitation and choking course. It was a real eye opener. I also learnt everything I could about Poppy’s condition online and through books and by joining support groups.

Our journey did not end at NICU discharge. We were soon back in the hospital for Poppy’s oesophagus to be stretched which is a follow up operation all TOF patients need to have.

Weaning was the next challenge which we faced. Poppy struggled at first but we kept trying. I had to make the food runny and offer water in between each mouthful. I gradually made the food bit thicker over the next couple of months. It was a long process but by 14 months, Poppy was able to have soft food and even toast.

Poppy’s reflux still plays up and we do our best to keep her away from germs in the winter. She may also eventually need to have another operation to prevent acid rising.

My advice to parents in similar situation to ours is to try not to panic if you find out your baby has a serious medical condition. Take a minute and breathe, keep a diary and ask for all the long medical words to be written down so you can research them. Take time for yourself and if you have other children try to include them in as much as you can. My older daughters have done a first aid course which made them feel included and stops them feeling scared if they ever need to see me trying to stop Poppy choking or performing CPR.

We were told Poppy may never be able to eat normally and that she may be slow in development but she is proving everyone wrong. I think we are incredibly lucky.

Want to share your story with us?

If you have had a premature or full term but sick baby in neonatal care, we would love to hear from you. Fill in our online form to share your story with us.
Share my story