Marnie’s story

The Noah’s Ark Children’s Hospital is the only place in Wales where newborn babies can have surgery. The hospital has a team of specialist surgeons, anaesthetists and dedicated children’s theatres equipped with neonatal equipment. Aftercare requires experienced neonatal nurses and often the involvement of clinical nurse specialists if a baby needs long term aftercare for bladder, bowel or gastrointestinal issues.

 

Four-month old Marnie was born with gastroschisis, a birth defect where a hole in the abdominal wall causes a baby’s intestines to grow outside of the body. Her parents, Phoebe and Morgan, were told at a 16 week scan and were put under the care of the foetal medicine team at the Noah’s Ark Children’s Hospital for Wales for regular observation. As the degree of baby Marnie’s gastroschisis didn’t appear too severe at that point, a plan was made to induce Phoebe at 37 weeks.

They were told that Marnie would need surgery followed by a period on NICU but that she would probably be home within eight weeks.

 

But things did not go according to plan. At 35 weeks, Phoebe noticed that the baby was moving a lot less than usual and the couple went in to their local hospital to be checked. Within what felt like minutes, Phoebe was whisked to theatre for an emergency C section. She was given a general anaesthetic to get the baby out as soon as possible and Morgan was taken to a room nearby to wait.

 

Marnie was born in a critical condition. Somewhere between the last scan and that day, the gastroschisis had become more complicated and Marnie was born with her large intestine, her small intestine and her stomach outside of her body. Some her intestine had also twisted. Morgan was taken to see Marnie and told to make the most of the time he had with her. On waking from her anaesthetic, Morgan had to tell Phoebe that their baby was being rushed to the Noah’s Ark Children’s Hospital for surgery that would hopefully save her life. Both Phoebe and Morgan were taken down to a ward full of new mums with their babies whilst they both anxiously awaited news of their new daughter.

 

During the ambulance ride to Noah’s Ark, Marnie was given a blood transfusion. When she arrived, she was rushed straight to the children’s theatre suite for surgery. Surgeon, Ceri Jones, had to remove a portion Marnie’s bowel, leaving her with only 40cm, which was successfully inserted into the abdominal cavity. Once stabilised, Marnie was taken to the neonatal intensive care unit and it was there, 24 hours later, that Phoebe and Morgan got to see their baby properly for the first time.

 

Morgan says: “I think we’d been running on adrenaline up to that point but as we walked into this new strange environment full of very unwell babies, we suddenly felt completely overwhelmed. Marnie was sedated and ventilated and covered in wires and she stayed that way for a week. We were told that the process of her recovery would be slow and, as she wasn’t able to process food, she’d be fed TPN (Total Parenteral Nutrition) through a central venous line.”

 

Marnie progressed from intensive care to the high dependency unit at five weeks old, she had her second operation. This time her small bowel was connected to her colon and the stoma which had been created so that waste could leave her body was reversed. Morgan and Phoebe say it was hard to see their baby ventilated and on intensive care again but they were reassured that this could be her last surgery and that they could be home by Christmas.

 

By eight weeks old, Marnie had outgrown the NICU and, as she was now medically stable, was moved on to Owl ward so that she could continue to heal and start feeding orally. But after three weeks on her new ward and with Christmas come and gone, things were failing to progress. Marnie was taking her feeds but would vomit them up almost immediately. Further investigations showed no visible blockage but part of Marnie’s bowel was dilated. Concerned at the lack of progress, the decision was made to operate for a third time to remove the narrowed bit of bowel that was causing the problem and while there, close a hernia that had developed. Marnie recovered quickly and was back down on Owl ward by the following lunchtime. But that evening she started to decline again, this time rapidly.

 

Phoebe said: “I’ve never heard an adult or baby cry like Marnie was crying and for days there was nothing we could do to comfort her. By the next day she was on the maximum amount of morphine possible, but it just wasn’t touching her. She was taken for an X-Ray, followed by an ultrasound and then a CT scan but none of them came up with anything definitive. We were watching our baby in absolute agony with no idea how to help her.”

 

With no other option open to them, the clinical team decided to take Marnie to theatre again in the hope that they would be able to see for themselves where the problem lay. It turned out that Marnie’s bowel had bent into an S shaped, causing fluid to gather around her organs. Some of the fluid had got into the site of Marnie’s newly repaired hernia, causing an infection. It was this that was causing Marnie so much pain.
The safest thing to do for the time being was to disconnect Marnie’s colon again and create two new stomas. Although they know there was very little choice, it means that Marnie’s progress has taken a few big steps backward.

But Morgan and Phoebe are trying their best to remain positive. They know that Marnie is bigger and stronger now and that she had more of a working bowel than she started off with. They also have great faith in their surgeon Ceri and the team of nurses and clinicians that support Marnie’s care. Morgan and Phoebe are confident that one day soon, they’ll be able to take their baby home.

 

The difference your support makes

Donations by people like you made it possible for the Noah’s Ark Charity to fund the children’s theatre suites where Marnie had her four operations. You helped fund the specialist equipment needed to perform intricate surgery on such a small baby and the ventilators and incubators that supported Marnie during recovery from her operations. You helped fund the beds on Owl ward where Morgan and Phoebe take it in turns to sleep next to their daughter and, as they’re missing their own dog very much, make a bit of pet therapy possible through visits from cockerpoo, Nico.