5 February 2025

When Jemima and Alastair’s twins arrived eight weeks early, little did they know that they would have to be tube fed to survive. William and Rose were born in May 2022 at 32 weeks, plus three days. 

Suddenly the family faced long-term periods of tube feeding, while William underwent eight surgeries just before his first birthday. It was a tiring and stressful time for the family, as Jemima and husband Alastair adapted to feeding the babies and watching them grow stronger each day. 

Jemima has shared the family’s story to help raise awareness about tube feeding in a hope that others who may end up in a similar situation have some more knowledge about it.  

In preparation for the birth, the couple completed the Twins Trust early pregnancy workshop and attended NCT classes. She said: “When William and Rose were born, it was a bit of a surprise as I was still working and wasn’t quite ready as they were early. I’m not sure you ever are. 

“I had a category 1 emergency C-section at a nearby hospital as our local one was full and I didn’t see them in theatre. They were whizzed away straightaway as they were so early.” 

Doctors told Jemima and Alastair that because the twins were born early, they didn’t have a sucking reflex. Speaking about the situation, Jemima said: “I didn’t know that the sucking reflex was something that didn’t develop until later on (around 35 weeks). So they had to be tube fed. We had done a lot of research before they were born but I had no idea tube feeding was a thing for babies.” 

At birth, William was diagnosed with Tracheo-Oesophageal Fistula and Oesophageal Atresia (TOF/OA). Doctors attempted to put a tube into him to feed but when it didn’t work, they discovered he had TOF/OA. “I would love to see tube feeding discussed more in an antenatal environment”.

Jemima explained: “With tube feeding what they do is they put the tube down into the stomach. To check that it’s in the right place they extract fluid from the tube and then they test the pH level of it. William’s wasn’t showing the right pH. They did an X-ray and it showed his oesophagus wasn’t formed properly – there was a gap in his oesophagus (OA). He had a TOF too, where the trachea is joined to the oesophagus. Anything that he swallowed would have gone into his lungs. It was pretty serious and is not survivable without surgery. He had to have his first surgery at 23 hours old.” 

William had to be transferred immediately to another hospital as neonatal surgery wasn’t available at the hospital where the twins were born. He had to have the two ends of his oesophagus joined together and then his trachea was split from his oesophagus. He was in surgery for five hours. Jemima stayed in the other hospital as Rose was in NICU and the new parents juggled the care between them. After five long days, Rose was transferred to the same neonatal unit as William but it wasn’t until a further week that they were in the same room. 

She added: “I felt for my husband as he was still working and didn’t take paternity leave until the twins came out of hospital. He would come to the hospital before work, then go to work and then come back to the hospital after work.” 

Jemima said being apart from the twins at first was tough – she didn’t hold William until he was five days old. She said: “I was completely overwhelmed. One minute you’re pregnant and then the next, you’re not and you don’t have your babies with you. It felt so unnatural. I didn’t get that golden hour that everyone talks about when they are first born, as I didn’t see them. It was a really weird feeling as they weren’t inside me but they weren’t with me. I know it had to happen to keep them safe but there’s so much talked about having that magical time when they first arrive. You feel a bit robbed.” 

The babies were fed via the feeding tube with donor milk and then formula for low-birthweight babies. As soon as the babies’ sucking reflex kicked in, they began bottle feeding with small amounts of milk. Jemima said it was a very careful process, making sure the babies got the milk they needed. 

She said: “We had these tiny bottles and we would hold the babies for a maximum of 20 minutes and anything they hadn’t finished in that time had to go down the tube. The energy it would take them to drink for longer than 20 minutes, they wouldn’t get enough energy from the milk to make it worth it. The total amount they had to be fed each 24-hour period was calculated based on their weight – with tube feeding they cannot indicate that they are too full so it has to be really carefully measured. The feeds have to happen at precise times so that there is enough liquid left in the stomach to test the pH – if the gap between feeds was too long we would not be able to know that the tube was in the correct place. Eventually we got to the point where they could take all their feeds orally, and the tubes could come out and we could go home – after five weeks.” 

Coming home

“Bringing them home was the best feeling in the world, I never thought we would get there. We got Rose home first, then a day later it was William. 

Being able to take them to their grandparents and see their faces was the best feeling ever. We had a week of bliss at home before William went in for more surgery. Where his oesophagus was operated on – there’s a ring of scar tissue which doesn’t grow at the same rate as everything else so you end up with a narrow area that needs to be stretched so it’s the same width. They put something similar to a balloon down his oesophagus to stretch it. He had that at 6, 9 and 12 weeks. He also had a recurrent TOF, twice, which is exceptionally rare, so in total had eight surgeries in his first year. 

“For the first year of their lives, Rose was perfectly healthy other than being early but we did spend about a third of William’s first year in hospital, the vast majority of that time was being tube fed. In the first seven months, there were only two weeks (not consecutive) when we weren’t at the hospital for one reason or another. Because of his surgery and complications we were still tube feeding as he turned one – it’s so difficult at that age as they want to pull out the tube and baby clothes with integrated mitts tend to stop at three to six months. 

“One of the hardest things about tube feeding with twins is the other wants to pull the tube out so we had to separate them a lot which felt so unnatural. We delayed weaning and we went for a puree approach rather than baby-led – even that was scary given William’s propensity to choking. Tube feeding can only be done by someone who has been signed off by the hospital so grandparents couldn’t help feed William, for example. I did it once at a garden centre but the looks I got made me feel so uncomfortable so I just stayed inside after that point.” 

Looking to the future

Jemima said: “William and Rose are doing well now, although William struggles with respiratory viruses. Where he has had surgery – there is a gap in the muscles in his oesophagus and trachea and he can get food and mucus stuck – so he’s more prone to choking. He really struggles to cough the phlegm and mucus out of his lungs when he has a cold and quite often ends up in hospital for up to a week on oxygen. As he gets older, his pipes should strengthen up and hopefully these sort of hospital visits will become less frequent. He may need further ‘stretch’ surgery in the future too. William has a fantastic team of surgeons, nurses, dietitians, and speech and language therapists who continue to support him – he will be under the care of the hospital his entire childhood.  

William has had treatment at Southampton Children’s Hospital – and has been supported by the charity, TOFS. “I would love to see tube feeding discussed more in an antenatal environment, and see more baby clothes in larger sizes that are adapted for medical needs such as tube feeding. Tube feeding can happen to any baby – either because they are born early or due to a complication with their oesophagus (or in William’s case, both). Given multiple pregnancies are much more likely to result in a premature birth, it would have been really helpful to know tube feeding was a possibility, and even to see some photos of it to help normalise it.

Things are always more scary when they are unknown. It would be great to see midwives talk about tube feeding more, and for all antenatal classes to cover it. It doesn’t need to be scary – tube feeding makes your baby as strong as possible and our babies wouldn’t be here today without it.”