Lilly Rae with her great grandparents Sheila Menear and Joan Rumbles – photos © NNUH

 

The most premature baby who our Norwich hospital neo-natal team has ever cared for celebrates her first birthday next week.
Little miracle Lilly Rae was born on December 9, at just 22 weeks and two days gestation. She weighed 511g.
She remained in the hospital on the neonatal intensive care unit for five months before her parents Tayla 26,and Shane, 30, were able to take her home.
Since then Lilly Rae has stunned doctors with her progress and now she is “bang on track” for a baby of her corrected age which means for a baby of seven and a half months – the age Lilly Rae would be if she had been born on her due date of 11 April. Her only significant setback has been a diagnosis, in October, of pulmonary hypertension, which means her are lungs are struggling to operate at full capacity, which can leave her with laboured breathing. The good news is that under the watchful eye of her hospital consultant Dr Priya Muthukumar along with the cardiologists at NNUH and Great Ormond Street Hospital (GOSH) this should improve with age as Lilly develops.
Dr Muthukumar said: “The initial few weeks of transition from hospital to home were challenging as would be expected of any family who have stayed in the hospital for such a long time but Tayla and Shane coped very well. They adapted very quickly to the change and were confident in looking after her enhanced needs such as oxygen monitoring, managing her reflux and unsettled nights at home with great strength and confidence along with the support of the outreach and numerous community teams.”
She added: “Face to face appointments were not possible all the time due to Covid restrictions but Tayla kept in constant touch with me through email, pictures and video calls. Lilly’s pulmonary hypertension was worrying but the specialist team at Great Ormond Street Hospital (GOSH) are cautiously optimistic that things should improve with age . Lilly in herself is developing to be a delightful little girl. Her smiles and interactions during every visit makes all the effort very much worth it. Remaining well and at home during this winter is crucial for Lilly as her lungs are extremely fragile. I wish Lilly a very happy birthday and many more to come.”
Tayla said: “She is just such a happy little girl she gurgles all the time. She is saying ‘Da-da-da’ and rolling over. She is really amazing. We are so lucky. We have had so many of the doctors telling us how remarkable she is. We had to go to Great Ormond Street Hospital and the consultant there said he read the notes of a bleed on the brain and everything Lilly has been through. Then he saw her and said he had not expected to see such a healthy baby. We are blessed.”
Tayla and Shane, from Fakenham, are planning to mark Lilly’s big day quietly, partly because of the Covid-19 restrictions, but also because the day holds some bittersweet memories.
Tayla said: “We are going to celebrate the fact that she is one and I am so excited to tell her that she is a year old, and what a remarkable little girl she is, but we also have to rewrite that history because that day a year ago was one of the worst days of our lives. It’s marking an event which was really, really difficult.
“We are in Tier two so we have said if any of the people in our bubble want to come in the garden and see her we can do that. We have obviously been really protective over Lilly because if she gets a cold that could have a devastating effect on her.
“Covid has been difficult because we have not been able to go to baby groups and see friends, but in some ways it has also made life a bit easier because we have not had to tell people how to act around her; they don’t lean in to look at her in the pram when we are out, for example.
“We will be careful and hopefully we will all have a great day. We remember all the time just how lucky we are. We have great doctors looking after her; Priya has been amazing. Whenerver we get upset about the setback with her lungs Priya tells us this is something Lilly is going to have to overcome and then reminds us that she is a 22-weeker – and just how remarkable she is.
“We really are blessed.”


Lilly Rae