On 15th December 2021, an ultrasound in Guernsey found that Keelan Poullard’s daughter, Emelia-Stella, had gastroschisis. This condition affects around 300 babies every year in the UK and involves surgery alongside specialist care. Aggie’s Burrow became her family’s ‘home-from-home’ during Emelia’s time in hospital, and Keelan reflects on this experience as her little one’s first birthday approaches…
I went for a gender scan at Island Ultrasound locally with my partner Nathan, nan, mum and mother-in-law to be told, ‘It’s a girl, but there’s a potential gastroschisis case.’ I was then told some information about gastroschisis but, as you can imagine, I was distraught and just wanted to rewind and start again. I was confused and extremely scared; I’d never heard of gastroschisis before. From there, I went home and started searching for any information that I could find, to make sure that I was educated on the condition before our daughter was brought earthside.
Two days after finding out this news, we went for further appointments and scans where gastroschisis was confirmed. We were told that it was not something that could be treated locally, not only in terms of operations, but also if I was to get an unsatisfactory CTG and needed to be rushed off to Southampton.
So, to avoid the potential risks I was referred to Southampton on 3rd March 2022, while having a couple of scans over here in Guernsey. When I had to go for scans in Southampton, it was hard as I struggled leaving Mayalia, our eldest daughter. Sometimes these appointments could be twice in the space of a week. During these appointments I also got to meet with surgical teams, to get a little insight into what was expected, and the routes we would take.
Mayalia came to Southampton and it felt like the longest two weeks of our lives. It was great having her with us again despite having to stay in a hotel for a month. This didn’t only have a negative impact on us, but it also meant that Mayalia wasn’t settled. There was no designated space for her to be able to have some normality, unless we were sat in the room. The last thing we wanted to be doing, while having a million things rushing through our minds, was to sit in a room.
So, we’d venture out most days. Every morning I had to get a taxi from the hotel to the hospital for my daily CTG which was roughly a 15-minute drive there and back. The taxi wasn’t always waiting once I had finished and without phone service while out of the hotel, my days seemed to be filled with stress and fear. Not long after Mayalia arrived we all caught Covid, not once, but twice. I was bed bound and couldn’t even lift a leg without intense pain but, of course, I still had to get up and ready for my 8am taxi to the hospital for my CTG.
It was just never ending; I was a mess inside and was trying my all to keep it together for not only my family but for little Emelia who was trying her hardest to grow without her bowel dilating anymore. I was spending my days sobbing and bickering because I was so down.
I then spoke to a lady called Ali who worked with the PPBF as well as being in regular contact with Jo, the PPBF’s co-founder. From there, with no exaggeration, we started to feel comfortable and could almost see a little light, finally!
We were extremely lucky to be offered Aggie’s Burrow – one of the flats the PPBF runs next to Southampton Hospital to accommodate young babies or children going through battles. Having this compassionate home to live in not only improved our mental state but it made me feel some sort of strength. I got up in the morning, got in the shower, made a cup of tea and toast – just like I would do at home. I’d then walk over to the hospital for a CTG or to see Emelia on the Neonatal Unit once she was born, which would take me no longer than a minute.
And then when it was time to leave, I’d get to go back to the flat and my daughter Mayalia would either be laying comfortably with her dad watching films or playing with her toys – something she couldn’t comfortably do at the hotel.
Despite the hotel staff being great, it’s just not ideal for a family looking at a long and challenging stay! Being away from home took its toll on us all but being able to live in an actual ‘home’ is something that helped us all massively. Yes, we may not have been happy all the time but having a home for the duration of our stay helped with our mental health which therefore helped us to be stronger for Emelia and Mayalia.
On weeks where we’d struggle. I would be sent a food voucher for us to go and fill the cupboards up. Again, this made us feel relieved as we were always able to have a hot meal cooked at home. During the last few months of the pregnancy, Emelia’s bowel kept dilating and growing larger. I made sure that I educated myself, but I still felt helpless.
Emelia-Stella was born at the Princess Anne Hospital in Southampton on 29th April 2022. She remained on the Neonatal Unit and was transferred to Ward G4 at Southampton General Hospital on 16th June. She was born with a complicated, complex form of gastroschisis with three bowel atresias – this was not a normal case. Emelia underwent an exploratory laparotomy and her bowel was placed into a silo on the 29th April, as it was exposed to open air. They wrapped her in clingfilm and took her down to surgery, to try the way you would go about things with a normal gastroschisis case. Unfortunately, this didn’t work. Her silo fell off and was re-replaced on 3rd May.
Emelia then underwent a closure of gastroschisis with a patch on 4th May (as her abdominal compartment was not large enough to accommodate a primary closure). She also had a few blood transfusions before being transferred to Ward G4. She underwent formation of a double-barrelled ileostomy and distal stoma. She remained in hospital on total parental nutrition (TPN). This included additional milk feeds (dummy dips) and every day I had to collect and re-feed with a nasogastric (NG tube) which came from her ileostomy through to her distal stoma.
On 9th September Emelia underwent closure of her ileostomy, keeping only the mucous fistula stoma in situ on the left side of her abdomen. She required long term TPN in hospital. She developed hyper bilirubinaemia (liver damage/jaundice) in July. This was discussed with King’s College Hospital and felt to be TPN related liver disease. Emelia was then started on Ursodeoxycholic acid on 3rd August. Her liver function continued to improve.
Emelia’s TPN was slowly weaned and she is now solely externally fed. She has also started weaning onto solids. She has recovered from the operations and no longer requires the TPN so far. Her neonatal ‘long line’ has now been removed unless needed again for the next operation.
Emelia still has a stoma in place and has many professionals involved in her care. She doesn’t always have straight forward days and nights getting regular pains which leads to her being unsettled. Sometimes she needs to be away from her sister, in a clean and safe environment. She has many nutritional needs and we’re still getting used to what’s good for her and what’s not. We’re unsure of what the future holds for Emelia with her already having complex gastroschisis as well as small bowel syndrome. They say that some children have around 300cm of bowel. Emelia-Stella only has 80cm, all being small intestines.
We are just waiting to find out when her next operation will be. If all goes to plan, it will hopefully be another bowel join and closure of her last ileostomy which will allow her to pass waste normally, for the first time! I hope and pray that the remaining bit of colon is still working as, when she was born, an important part of her bowel (as well as her appendix) was hanging on by a blood vessel. This is a constant worry of ours.
Aside from all of this, Emelia has come so far and we’re all so proud of her. We have faith that she will conquer anything that life throws at her. There are so many factors as to why and how the PPBF have helped not only us, but many others since 2003, and they are still thriving. I want to thank every one of them from the bottom of my heart, while sending my love to anyone struggling.
Our compassionate housing next door to Southampton Hospital is incredibly important to families like Keelan’s. These lifelines continue to help Guernsey’s parents during difficult times thanks to individual nights purchased, kind donations and corporate sponsorships. You can Buy-A-Night to support our flats here and provide families with a safe, comfortable and reassuring place to stay, while their little one receives off-island care.