Pictured: Proud parents Elisha and Steven with little Archie
The parents of a child born extremely prematurely say they took part in clinical research to help future families facing the same life-threatening ordeal.
Archie Lawrence was born to Elisha Stott, 23, and Steven Lawrence, 24, at the Lancashire Women and Newborn Centre, Burnley General Teaching Hospital, on 4 August 2016.
Mums typically give birth after 40 weeks, but little Archie arrived after only 25. His expected due date was November 15, meaning he was classified as “extremely pre-term”.
Most babies born following a standard pregnancy will weigh between 5lbs 8oz (2,500 grams) and 8lbs 13oz (4,000g). Archie weighed only 1lb 1oz.
With his organs so underdeveloped and unprepared for life outside the womb, Archie was rushed to the hospital’s Neonatal Intensive Care Unit (NICU), where he was put on ventilation and into an incubator.
While most mums take their children home within a matter of days, Archie would not be well enough to be discharged for six months. His parents could not even hold him for six weeks.
His complications included:
- Severe chronic lung disease and multiple collapsed lungs.
- Patent Ductus Arteriosus (PDA), which is an unclosed hole in the aorta.
- Severe Gastro-Oesophageal Reflux Disease, where acid from the stomach leaks into the oesophagus (this is linked to his continued poor weight gain).
- Retinopathy of prematurity (ROP) in both eyes; an eye disease which causes abnormal blood vessels to grow in the retina.
However, thanks to the care received at East Lancashire Hospitals NHS Trust, Archie is now developing into a lively and happy little boy.
But his good health today is a world apart from the stark reality facing Burnley residents Elisha and Steven after his birth, when statistics dictated the chances of survival were only 50-50.
Elisha, a first-time mum, said: “Because I was also in a bad way, I didn’t get to see him for 24 hours. It was such a frightening time and something that had never even crossed my mind. I didn’t know anything about NICU and I didn’t even know babies that premature could actually live.”
Steven said: “I was able to see Archie a couple of hours after the birth and the doctors had to be honest that he was in a bad state.
"For weeks I was in a position where you’re constantly waiting for your phone to go off. Every time it did, I had that little ‘heart attack moment’ because I was always worried there could be some bad news from the hospital. His life was one big series of complications.”
Within a week of Archie’s birth, one of NICU’s research nurses approached Elisha and Steven about the prospect of him taking part in a research study called Planet-2.
Planet-2 is an abbreviation for Platelets for Neonatal Transfusion 2. It is part of the National Institute for Health Research (NIHR) Clinical Research Network (CRN) portfolio of studies being carried out to constantly improve treatments and patient outcomes.
This particular study is helping medics to better understand when to give transfusions of platelets to premature babies with low platelet counts.
After being given a comprehensive explanation and assurances over their son’s health, Elisha and Steven agreed to Archie taking part.
Elisha said: “We both decided that we wanted other people to benefit from anything that could be learned from Archie’s situation.”
Steven added: “If you look at NICU today, take that back a generation and some of the medical advances that Archie has benefitted from weren’t around. Without the things doctors have learned from other babies who took part in research studies in years gone by, they wouldn’t have been able to save our baby. It’s as simple as that.”
Archie remained in a serious condition in hospital for a number of months during which he suffered multiple setbacks.
Most frighteningly, after five months he developed sepsis which required him to be transferred back to intensive care. As his lungs failed and his body started to give up, the outlook was bleak before Archie finally responded to antibiotics and a tailor-made steroid plan.
All the while, however, research staff were able to record vital medical data which has fed into the overall findings of the Planet-2 study.
Thankfully, Archie’s blood platelet count did not drop to the necessary level for a transfusion and his overall health steadily improved.
So much so that on 31 January 2017 – six months after his birth – Elisha and Steven were finally able to take their son back to their Burnley home.
It is now more than a year since Archie was discharged. He has been off oxygen support since mid-January 2018, has started crawling and has almost all his teeth.
Steven, an award-winning barista, said: “At home, he’s into everything. He laughs and gets to the point where he’s shaking with excitement at TV shows. He’s his own little person now. He has his favourite toys, favourite colours and favourite foods.”
Elisha said: “He’s obviously not as developed as a child born after 40 weeks would be and is quite weak. He’s missing a lot of muscle that he would have built up as a baby doing baby things, whereas he spent his time lying on his back, but we’ve been told he will catch up.”
Elisha and Steven say nothing could have prepared them for the six months of worry that followed Archie’s birth, but they are full of praise for the “excellent” care they received. The couple even remain friends with members of the nursing team.
What’s more, they are proud to say their son participated in clinical research.
Steven said: “It was the fact that everybody made it so easy for us. While we were dealing with all the emotions that came with Archie being born so prematurely, they took care of everything but also made sure everything was fully explained to us and kept us in the loop every step of the way.”
Elisha said: “If I was to speak with another couple in our situation considering research, I’d say ‘go for it’. We had a positive experience and we know that all these things they learn from babies like Archie will add up to help future generations.”
Dr Andrew Cox, Consultant Neonatologist and Principal Investigator for PLANET2, said: “Archie was extremely premature when he was born and babies of this gestation can often be extremely unwell and unstable. I am very pleased with how well Archie has done. We really appreciate the courage and selflessness of parents, such as Archie’s, who agree to enrol their unwell babies into clinical trials such as the Planet 2 trial.
“It is through participating in research studies such as this that care can be improved and so benefit the babies and their parents in the future. We have an active research interest here at East Lancashire NICU and would like to thank all of the many parents who consent to their babies entering trials, and so contributing vital knowledge to the future care of sick babies”.
What is the PlaNeT-2 study?
Platelets are the cells that help the blood to clot. Platelet transfusions are given to babies with low levels of platelets and signs of bleeding.
The aim of this study, which is funded and managed by NHS Blood and Transplant, is to better understand when to give transfusions of platelets to babies with low platelet counts and no evidence of bleeding.
Researchers have therefore designed the study to compare outcomes for babies transfused at two different platelet levels. Babies whose parents agree to take part are placed at random into one of two groups:
- One group of babies receive a platelet transfusion whenever their platelet count drops below 50.
- Another group receive a platelet transfusion whenever their platelet count drops below 25. This is the group that Archie was randomised into.
The study was conducted in 40 Neonatal Intensive Care Units in the UK, Ireland and the Netherlands. Recruitment has now been completed, with baby number 660 being randomised in August 2017. The initial results will be published later in 2018.