Our journey through IVF and prematurity - Sherril's story

In 2012 my husband and I discovered we were pregnant and were looking forward to our little girl joining us in life’s journey. Sadly, at 20 weeks I went into early labour.

We were devastated, watching our little girl waving at us on the screen, but being told she was too small to survive birth and would be born asleep. She was a tiny 11oz but perfect in every way from her blonde eyelashes to blonde eyebrows! We named her Bella Rosa.

This was a terrible time in our lives. We found out that babies born under 24 weeks don’t get a death certificate which didn’t make any sense to us. We still managed to bury our angel and hold a lovely funeral to remember her. We found her grave a place of comfort and still do.

Most people wait a while before trying for another baby but we decided only to wait a few months. When we still weren’t pregnant after a year, we went to the fertility clinic.

We had two unsuccessful tries of IUI and then tried IVF treatment. Out of my 15 eggs only two made it to transfer day. One was top grade and the other was not in great shape but “useable” in the doctor’s eyes. They said if we didn’t use it they dispose of it, and there was no way I could let that happen.

We transferred both embryos and at our six week scan we were told we were pregnant with twins.

It was a rough pregnancy. I was very sick and exhausted constantly. Luckily my work place was great and allowed me time off when I needed it. I started having spotting issues around 16 weeks. I kept thinking every day could be the last day I could be pregnant and never knew what each morning would bring when I woke up.

At 20 weeks we found out that Twin One was a girl and Twin Two was a boy and we were buzzing. After the measurements were taken, and the nurse scanning me said she was just nipping out to get a doctor. Our hearts sank. We had no clue what was coming.

The specialist came in and said she could see a dark shadow on Twin One’s lung. She said it has only been seen a few times and she wanted us to go and see the foetal medicine specialists in Glasgow.

At the dreaded appointment, the doctor confirmed that the dark shadow was in fact a rare lung tumour called a CCAM. We were told that the CCAM could grow with the lung and either kill our daughter in utero or could stay the same size and the lung would outgrow it. We would need three scans a week at the hospital in Glasgow to measure the CCAM, and that the twins would need to be delivered there.

I went along to my scans never knowing what to expect and would hold my breath during the examination. There was a point when the tumour grew and the doctor discussed doing an in utero surgery on me to remove the tumour, but the risks were too great for both babies.

At 23+5 weeks I woke up from a nap and felt my waters break. The local hospital confirmed what had happened and said they needed to get steroids and other drugs into me to try and delay labour. All memories of Bella came flooding back and we prepared ourselves for the worst. We couldn’t believe we had made it this far and that it could all be taken away from us.

As my labour progressed my local hospital said that I should give birth there and that the twins should be transferred to Glasgow after their arrival. I begged to be given more medicine to slow down labour so I could be transferred ahead of giving birth because this seemed safer to me. Fortunately, they granted my request and I was admitted to a private birth room at Glasgow.

Eventually, I was taken to a delivery room where 22 health professionals were waiting. I have never been so vulnerable in all my life and will never forget how grey my husband’s face was.

Twin One, our daughter Anya, arrived first weighing 650g. All we saw was her tiny pink hat as she got wheeled past us with her team. I shouted: “Is she alive?” and to my relief they replied: “Of course!”

A whole 90 minutes later our little man arrived still inside his amniotic sac. Mason weighed 620g and off he was whisked off too. We shouted our question again: “Is he alive?” and heard another “Yes!”

I was put to sleep so they could remove some lodged placenta. I woke up in recovery hours later with a start. Like an angel, my husband appeared with two photographs in his hand of the twins. They looked see-through and purple with many tubes and wires all through their bodies.

The NICU days rolled into weeks and both twins fought a never-ending list of complications: collapsed lungs, sepsis, NEC (twice each), PDAs, perforated bowels and infections. They needed lots of medical interventions such as heel pricks, platelet and blood transfusions and were ventilated for two months solid, both oscillated at times too to keep them alive.

At two months old, Mason had a central line surgery. There was a complication and a blood clot on the line attached to his heart. We were told his organs were shutting down and he would not survive.

Our sweet boy - who was growing and doing so well - was now really poorly in the blink of an eye. Overnight we watched the doctors battle to catheterise him without success. By the morning the doctors said it would be best for Mason to be taken off life support. We were broken.

We had his ventilator removed and held him in our arms; telling him we loved him and asking him to watch over his sister Anya and keep her safe. We told him to fly to the angels where his big sister Bella would be waiting for him. Magically, for a brief moment Mason opened his eyes as if to say “Don’t worry” before joining Bella in heaven.

We spent the day with Mason; bathing him, putting fresh clothes on him and swaddling him so that he was ready for the whole family to say their last goodbyes. We buried Mason with his big sister, knowing they are together has brought us comfort and some sort of peace.

Straight after the funeral, we had to head back to neonatal as Anya needed urgent laser eye treatment for ROP. We were told it was advanced and she had to have surgery within 35 hours. Going from trauma to trauma was awful. We were grieving for our son while having to let our surviving baby be put to sleep for surgery. I will never forget that feeling.

Anya pulled through quickly and soon we were told she was well enough to be transferred to our local hospital. The new unit had a whole new set of rules and I couldn’t believe how strict they were.

At just over four months old and on Christmas Eve, Anya was allowed home on oxygen. Anya spent the first couple of years in and out of the hospital both in Glasgow and our local children’s ward for surgeries and stomach problems. Her laser eye treatment was unsuccessful and she is blind in one eye and visually impaired in the other.

Anya is now three and a half. She attends nursery in the mornings where she has specialist support. She is still fed via tube and has no interest in drinking but will eat small amounts of food. Anya is the happiest, brightest little girl who loves swimming, animals and books. We have had a tough journey but have maintained a level of “can do” attitude which we hope remains with Anya for the rest of her life. We treat her just like any other child and adapt to her needs. We are so lucky to have her and are forever grateful to our son and daughter angels who must be keeping their sister safe.