Esme Raine Burnell

Our princess Esme Raine arrived in this world on 8th November 2020, weighing only 2.08kg. She was so beautiful, very long, with a head full of hair.

All throughout the pregnancy there were no concerns, bloods were normal along with the anatomy scan at 20-weeks which also showed no concerns.

Esme was measuring small, and at 30 weeks it was noted that she had dilated kidneys, which we were told was quite common and antibiotics would be prescribed after birth.

Because of where Esme was plotting on the growth chart, additional scans took place and CTG monitoring was commenced twice weekly up until delivery.

When Esme was born she received Neonatal Emergency care and was taken to the Special Care Unit. Numerous investigations took place, and on day 2, Esme started showing chest recessions. We were lucky to have had the consultant there at that time as Esme needed intubating, which proved to be very difficult, and because of this, it was agreed that Esme would be transferred to Birmingham Children’s Hospital on Intensive Care.

Esme had a CT scan which showed she had obstructed airways and at only 6 days old she was fitted with a tracheostomy, a decision that we both have never looked back on. Esme’s ENT surgeon, Channa, was without a doubt amazing, he was always so positive with us and believed in Esme.

We were told that Esme would have to stay in hospital until we both completed our training with tracheostomy care, suctioning, and life support. We wanted to start our training straight away and we knew it would possibly take up to two month for us both to be signed off.

Because of a few uncommon features, blood tests were taken to try and diagnose Esme’s condition. Our hearts were broken when, at only 2 weeks old, we were told the unbearable news that Esme had Full Trisomy 18.

How could this even be possible?

We started to research this diagnosis and because of Esme’s heart defect, we knew that surgery in the UK would not be offered, therefore we only hoped and prayed that the holes would get smaller or close eventually. We were always told they would never close but reading up on this we knew that in some babies they had.

Each week we would have a meeting with a different specialists as Esme had a wide team involved in her care. We asked the teams if Esme could be treated as ‘Esme lead care’ and not Trisomy 18, as she deserved the best chance to show us what she could do.

We were continuously told Esme would not gain weight, but she did exactly that and more, she was hitting milestones.

Luckily, we were able to stay in Ronald McDonald house, which is very close to the hospital, and we have no other children so we were able to spend at least 12-14 hours a day by her side, taking it in turns as only one parent could be by the bedside due to COVID.

Esme loved a cuddle. You could tell she was so content and happiest when out of her bed. She had us wrapped around her little finger. She was adored by the nurses and was always called Princess Esme.

Christmas arrived and we dressed Esme up as an Elf, we tried to make it as special as possible. Santa visited the ward, bearing gifts, and we got to spend time as a family of 3, the best gift we could ever ask for.

Esme was thriving, we were hoping to get her home as soon as possible, however because she was CPAP dependent, it meant that a home ventilator had to be agreed in order for discharge planning. The Respiratory team initially did not support this, and Esme was still only weighing small. Meetings took place to try to get a plan for a home ventilator.

Sadly, at the end of January , Esme contracted COVID, where she had to be isolated and again, we were told to prepare for the worst. Esme had blood transfusions, she was put back on the invasive ventilator, her oxygen requirement went up, medications increased, and scans and X-rays took place to try and get her stable.

We were planning to bring Esme home after 24 hours if she did not improve. After 10 days, Esme started to recover, she was put back onto CPAP with no oxygen requirement. Our training for tracheostomy started to get signed off and we started medication administering. Esme did prove a lot of people wrong.

We had another meeting with Respiratory, and finally it was agreed that if Esme remained on air, she would be given the home ventilator package and so we started our ventilator training, which was going extremely well.

The best moment happened during our hospital stay, Esme started to smile, she would laugh to herself and giggle, it was priceless! We were sometimes told that Esme wouldn’t smile, but she did, and once she started, she wouldn’t stop.

Time went by and Esme started having little moments, she would start to desaturate, have increased heart rate and become agitated. We then spent nights with her by her bed, giving her cuddles during the early hours of the morning, as we wanted to make her feel safe and comfortable.

On 16th March we received the news that Esme’s heart defect was worsening, and she was in End Stage Heart Failure, we knew then it was time to bring her home.

Esme was brought home by the KIDS Transport team. Rapid planning took place to enable us to get her home in the time we did. We are so very grateful for everyone involved in her care.

All throughout Esme’s hospital stay the teams were fantastic with her, especially Dr Neal, her Long-Term Consultant. He made sure the teams had background knowledge of Trisomy 18, giving Esme the best chance and doing everything for her.

When Esme arrived home, it was magical, she got to see her bedroom, she was smiling. We cuddled her in our arms with no monitoring, no wires attached, it was perfect.

Esme fought very hard in life, whatever that was thrown at her she gave it her all, she never gave up and we are so very blessed to call her our daughter.

She touched so many hearts and has left footprints for sure. She is a blessing from God, and we will continue to share her strength and story.

She has taught us so many lessons in the short time she was with us, and she will always be our precious baby girl.

One day, we hope invasive surgery can be offered to babies with Trisomy 13 and 18 in the UK, as we know they all deserve the same chance as any other baby, just like Esme, who was given a tracheostomy at only 6 days old, where she recovered well from the surgery and definitely thrived.

Forever Loved.

 8.11.20 - 19.3.21