Little 22-week miracle goes home

Just Regional
May 6, 2020 5 mins read

Last week was a very special week for a north Norfolk family who have taken home their daughter, who was born five months premature.

This was equally momentous for the staff of the Norfolk and Norwich University Hospital Neonatal Intensive Care Unit (NICU) as Lilly Rae is now the most premature-born baby that the team has ever cared for who has survived to go home.

Tayla Menear gave birth to Lilly on December 9 at just 22 weeks and two days gestation. But despite weighing in at just 511g, Lilly proved to be a fighter from the start.

Dedicated, expert care in treating such a tiny baby meant Tayla and her partner, Shane Rumbles, were finally able to go home with Lilly for the first time to start the next stage of their remarkable journey together as a family.

Leaving the ward on Tuesday, Tayla said: “I cannot believe this day has come. We never dared hope that this could happen. I still don’t think I will believe it until Lilly is tucked up in her Moses basket at home with me and Shane.”

NNUH chief executive Sam Higginson said: “I am absolutely delighted that Lilly has made such good progress and that she has been able to go home. These have been challenging times for Tayla and Shane, and I wish them all the joy in the world.

“I also pay tribute to our extremely talented NICU team who have looked after Lilly so well over the last four months. They too must take great joy from this.”

Lilly came out with a beating heart but very little breathing and movements, as expected for a baby born so early. The NICU team, led by consultant neonatologist Dr Priya Muthukumar was ready and waiting in the delivery room to stabilise her before admission to NICU.

Photos from Lilly’s journey with her parents and the NICU team at the Norfolk and Norwich University Hospital.

For just over four months a large team of nurses and doctors have looked after Lilly round the clock to give her the care needed to help her overcome some major hurdles, including three serious infections, a bleed on her brain and major surgery.

Tayla was just 21 weeks and 4 days into her pregnancy when admitted to hospital with suspected infection and broken waters.

The NICU team told Tayla that they would aim to be present at birth to assess her baby, but that if she delivered before 22 weeks it was very unlikely they would be able to provide any active intervention to save her, and that even if she delivered after 22 weeks the chances of survival with intervention were not high..

After seven weeks she came the ventilator but had several life-threatening infections which needed to be treated with antibiotics and at almost three months of age needed to undergo a major surgical operation on a distended intestine.

And in the midst of all this, coronavirus struck, meaning Tayla and Shane could no longer visit their daughter together or for very long. With only one parent allowed by her side, Tayla visited the hospital on a daily basis for two hours each day while Shane remained at home, near Fakenham.

Shane said: “It has been hard, especially because I have not been seeing Lilly.  We used to talk everything through together on the way back from the NICU each day.”

It was month before they could hold their daughter and Tayla said: “I thought I would be scared holding Lilly as she was so fragile, but from the moment she was born I needed to touch and hold her. So, when the nurse suggested holding her for the first time, I was far too excited to feel scared.”

Shane added: “I felt excited but terrified to hold Lilly. It took a few more weeks before I held Lilly for the first time.”

The family celebrated Lilly’s expected birthday on April 11 and now they will be celebrating once more – at home.

Tayla said: “It was complete disbelief. For the first few months of Lilly’s life no one knew if we would ever reach the point of going home as a family. Then coronavirus made this stressful situation even worse. There have been several things we have not yet been able to do with Lilly together that I didn’t want Shane to miss out on, so once the outreach team have made sure everything is OK at home we will give Lilly a bath together.”

Lilly will continue to receive ongoing support from the NICU team, including from specialist neonatal outreach nurses who will visit her regularly at home, and from Dr Muthukumar, who is Lilly’s named consultant neonatologist.

She said: “It is too early to predict exactly what Lilly’s long-term outcome will be, as we know babies born so prematurely are at higher risk of future developmental issues.”

And, praising the team who worked so hard to help Lilly, she added: “That first hour is vitally important and having a senior team present for delivery meant we could make the decisions and take action immediately which makes a huge difference to both immediate and long-term outcome.  “In terms of her longer prognosis, it’s looking pretty good.”

Tayla said: “I found a quote that said: ‘I never knew the NICU existed until my baby could not live without it.’ This is so true. I didn’t either. I couldn’t find anything about premature babies born this early and felt very alone. I just wanted one example.

Before Lilly’s birth, Dr Clarke [Paul Clarke, Neonatologist] had mentioned that their NICU had only ever seen one previous baby born at 22 weeks survive – a little boy born the previous year. I have since come across other cases and now want people to know if they go into labour at 22 weeks not to feel hopeless.  There is always a chance.”

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