Posted on: 03 Mar 2022
Mark Whyley and his family are raising money for Nottingham Hospitals Charity in memory of his twin daughters, Annabelle and Evelyn.
In his blog, Mark shares the story of his daughters, who sadly passed away in September 2021, and why he is fundraising in their memory.
It’s tradition on New Year’s Eve for the Whyley family to reflect on the best and worst bits of the year, there’s usually much debate to coincide with the laughter and reliving the moments as a family, but NYE 2021 was a little more straightforward and sombre.
In April 2021, myself and Lauren (my wife and actually a neonatal nurse) were surprised to learn that we were to be welcoming another addition to our little family and that Albert (now two) was to be a big brother. We went for our first scan to realise that we were expecting twins... if you think finding out you’re pregnant when you weren’t expecting it is a shock, try following that up with seeing two on the screen!
Feelings of elation, joy and excitement were mixed with shock, panic, and a hint of uncertainty in one of life’s glorious cocktails of emotion. Once we got our heads around what was happening and that our lives were never going to be the same again (three children under three, gulp!!), we pulled together and began enjoying what was always going to be a life-changing process.
Lauren, Albert and Mark Whyley
It became clear around 16 weeks that things were not going to be as straightforward as we all hoped. Twin A was smaller than Twin B and there was a noticeable difference in the fluid around them both, which can be an indicator that the placenta has not been divided equally for both babies.
Our consultant sought a second opinion from a colleague and they confirmed that there was a hint that the pregnancy might be developing what is known as Twin-to-Twin transfusion syndrome. Put simply this is a rare condition (around 100 UK cases per year) where the blood vessels in the placenta are not evenly distributed between each baby and the blood exchange is not equal – one receives less than they would expect and the other receives more.
Twin-to-Twin syndrome progressed, and Lauren underwent a highly technical laser procedure to try and even out the blood distribution, and whilst the operation appeared to go well, a few weeks later and several more trips for scans and check-ups, it was clear that the procedure wasn’t as effective as we hoped it would be.
We talked at length and several times a week with the experts about the next steps, but our options were limited. Away from the hospital we were reading medical literature, frantically looking for things that we could do to help what we now knew were to be our two little girls.
We were always set on Annabelle, which was rolled over from our first pregnancy, but Evelyn was a little more contested, and it was settled by looking at the meaning of each of the options we had on one of our many trips to the specialists in Birmingham. Evelyn meaning ‘A wished for child’.
Despite the laser surgery, the Twin-to-Twin syndrome was reoccurring and alongside that the growth rate of each twin was distinctive. We were also battling selective growth restriction (occurs in less than 15% of twin pregnancies) where one twin receives more of the nourishment than the other, leading to reduced growth and development. The outcome was looking bleak and there was nothing that could be done. We had to sit, wait, and pray for a miracle.
Despite the uncertainty about what would happen, the girls’ condition did not deteriorate over the next few weeks, and whilst there was also little improvement, we clung to the spirit of the girls who were fighting not just for each other but for us. We were having scans every 48 hours to keep an eye on progress, and these would last well over an hour. That time was truly special because we got to learn the personalities of our girls.
Annabelle wasn’t shy at all, but she also liked to play games with the consultants who were trying to measure her, constantly changing position and reverting back just as the consultant had found what they were looking for – she gets that from me. Little Evelyn meanwhile was more helpful for the consultants and often watched on as Annabelle was playing games, and she’d often raise her hand in what we thought was her telling her sister off.
Our world turned upside down one Monday in September… we received the news that Evelyn had sustained a brain injury during the laser procedure, and it was highly unlikely that she would survive, and our attention turned to giving Annabelle every chance of surviving. The fluid build-up around Annabelle was making Lauren extremely uncomfortable and it had been arranged to drain some of that fluid to make the girls and Lauren more comfortable, but we didn’t get that far.
As part of the preparation to remove the fluid, the consultant noticed that Annabelle was distressed and in what only can be described as an absolute whirlwind 30 minutes, the girls were here. In theatre, Evelyn was given to us as part of the pre-agreed plan and Annabelle was taken to the neonatal intensive care unit for specialist support.
Evelyn stayed with us for an hour, we held her tight and made memories that we will cherish forever. She gained her angel wings that morning but stayed with us in a specialist cooling cot that meant we could all be together. We all visited Annabelle shortly after and she was surprising everyone with how well she was doing, and our spirits were lifted, I remember saying to myself whilst I popped home to pick up some bits, she’s going to be ok.
We spent precious time with Evelyn in the hours that followed, and the neonatal team were fantastic in supporting us, they created memory boxes that contained footprints, handprints and Annabelle, Evelyn and Albert who was at home with Pops and Nanny, were all given matching teddies.
The turbulence of the entire process took us on another journey overnight as we received a phone call to go round from maternity to the neonatal unit as Annabelle was becoming more poorly. Whilst we were there she stopped breathing but they managed to get her back and she was made stable again.
It became clear in the hours that followed that my optimism was premature and that Annabelle was really poorly, and we had a long way to go… later that day Annabelle was tired of fighting and gained her angel wings in her mummy’s arms with her sister by her side.
Annabelle and Evelyn's tiny feet
We were heartbroken, numb, and lost. Our family gathered around us in solidarity, but this had to be a nightmare. I kept pinching myself hoping to wake up in our bed, but it wasn’t, we had lost our second child in 48 hours. In the days that followed, we were shell shocked at what had happened.
We sat in a room on maternity with our girls next to us contemplating if life would ever be the same again… the only ray of sunshine we had was Albert, who was aware of what was going on but wasn’t old enough to understand the severity of the situation, and his love and innocence was a real strength in the darkest time of our life.
We are still getting the support that we need to heal and last year will forever be etched in our hearts. We wouldn’t be in the position that we are in now without the love and support of our family and friends, but we have to acknowledge the incredible work that the foetal medicine and neonatal teams do – they are inspiring, and whilst I hope to never see that ward ever again, I will be forever grateful for the support they gave us and the support they will give to others.
We are a very private family, but we want to share our story and raise as much money as we can to support two fantastic teams and also families that are unfortunate to experience a similar path to us.
In the first of several fundraising events, planned by the family and close friends in memory of Annabelle and Evelyn, Mark will take on the Manchester Marathon on 3rd April 2022. You can visit Mark’s JustGiving page here.