‘The Rainbow Trust and Marlene were a lifeline to us’

Twins, Hugo and Myles Worthington with parents Anna and Darren and brother Ellis
Twins, Hugo and Myles Worthington with parents Anna and Darren and brother Ellis
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When a new baby arrives, as well as being a happy occasion, it can throw existing family routines into disarray as caring for another child brings added pressures and time constraints.

So when Anna and Darren Worthington, of Fulwood, Preston, found out they were expecting twins, although they were delighted, they knew life would change forever for them and their son Ellis.

However, the couple never imagined how their world would be sent into turmoil when their identical twin boys Hugo and Myles arrived unexpectedly early at just 28 weeks of pregnancy needing specialist medical care.

And they found themselves having to divide their time and attention three ways between one premature baby at Preston hospital, another at Liverpool’s Alder Hey Hospital and their son Ellis at home who was three at the time.

Anna, 35, who is a mental health nurse in Chorley, recalls: “We were very excited when we found out we were expecting twins.

“Twins are special and exciting and although it came as a shock, it was a nice one.

“Ellis was so excited too as while most of his friends were having a new baby brother or sister, he knew he would be getting two babies!”

Anna’s pregnancy went smoothly - until one day she was sitting at home straightening her hair in preparation to meet friends at a children’s play centre when her waters suddenly broke.

Anna says: “I remember feeling absolutely terrified as I was only 28 weeks pregnant and I thought it was far too early and that the babies wouldn’t make it.

“Luckily, Darren was at home so he rushed me to the Royal Preston Hospital.

“Even though we only live around the corner from the hospital, it felt like the longest journey of my life.”

At the hospital the couple were told that Twin One - who ended up being Myles - had burst his waters while Hugo was still in his.

Anna was monitored and given steroid injections to help her babies’ lungs develop and was put on antibiotics to prevent infection.

Just two days later, she gave birth to Hugo and Myles were born naturally weighing just over 2lbs each.

Anna remembers: “They were both so incredibly tiny. The bottom of their legs were as small as my thumb and their full hands were the size of the tip of my finger.”

Both babies had to be ventilated in the high dependency unit of the hospital’s neonatal unit.

Myles came off the ventilator first and went on to C pap for assisted breathing.

However, doctors tried unsuccessfully for 10 days to get Hugo off the ventilator. They then discovered the reason they couldn’t manage it was because Hugo had a heart defect.

In fact, Hugo actually had two heart defects and the second one was actually keeping him alive.

Anna explains: “Hugo had a heart defect and also a hole in his heart that was keeping him alive.

“Hugo had Total Anomalous Pulmonary Venous Drainage which meant that all his pulmonary arteries did not go into the other side of the heart like they should to take blood around the body.

“They went into another vein instead.

“Hugo should not have had any oxygen going to his heart but because of the hole in his heart, he was.

“We were also told that if Hugo had been born at 27 weeks instead of 28 weeks, he probably would not have survived.”

Anna and Darren then faced the long wait until Hugo reached 6lb before Alder Hey Hospital would operate and repair the heart defect.

Hugo was four months old when he reached the required 6lb and he underwent open heart surgery at Alder Hey. However, medics had not expected him to survive to that point.

Anna says: “It is a credit to the neonatal unit that Hugo did make it as they looked after him so well.”

The operation was successful and doctors thought Hugo would need oxygen for the rest of his life following it.

But to their amazement, he came off oxygen and started breathing for himself after just a week.

Hugo became poorly following the surgery with infections and had to stay in Alder Hey Hospital.

Anna explains: “At one point, we had Hugo in Alder Hey Hospital, Myles in neonatal at Preston and Ellis at home so we found ourselves being split in three different directions.

“Myles ended up being in hospital for four months while Hugo was in hospital for six months.”

It was while Hugo was in hospital that doctors found he had bilateral retinoblastoma - a form of eye cancer.

A tumour on his left eye left him practically blind in that eye, with just some peripheral vision.

Myles was also found to have eye cancer, though fortunately it was discovered early enough for it to be lasered.

Hugo endured six months of chemotherapy despite doctors fearing he may not get through one round.

Anna recalls: “Just 12 weeks after open heart surgery, Hugo started chemotherapy and he had it for six months.

“As he was so premature and small, doctors feared it would be too much for him, but he battled through.

“We had to go to Birmingham Children’s Hospital because they were the specialists for retinoblastoma.

“Doctors were making plans to remove Hugo’s eye but because he responded so well to treatment, they managed to save his eye and any vision left in that eye.”

It was at this point the family were introduced to the Rainbow Trust charity’s family support worker Marlene who has been helping the family ever since.

The family were under immense pressure as Anna had to try and divide her time between one premature baby at Alder Hey Hospital, another at Preston Hospital and their other son, Ellis.

Husband Darren, 44, who was a self-employed builder, gave up work to help Anna care for their three children, which also added a financial strain on the family.

Anna says: “Our health visitor referred us to the charity the Rainbow Trust and they arranged for family support worker Marlene Shirley to come to our home and help us.

“It was quite difficult at first to accept help - especially from a charity.

“You feel that you are coping on your own and I felt that there would be other people who needed the support of the charity more than we did.

“The thought of having someone else come into our home and family was also daunting.

“However, the minute we were introduced to Marlene, it was as if we had known her forever.

“It is really hard to let someone into your home and into your life and let them look after your children. But Marlene made it all really easy.

“This is testament to the skills everyone at the Rainbow Trust has in supporting families so they can blend into your home at a stressful time.”

“Marlene is lovely and was such a support. When Myles and Hugo were tube-fed, Darren and I were the only ones who could do it.

“But when Marlene came along, she was trained in nasal gastric feeding too so she was able to help and give us a break so we could spend time with Ellis.

“While we were doing various hospital visits, Ellis was being passed around to various relatives.

“But when Marlene started looking after the twins, we were able to spend quality time with him again.

“The Rainbow Trust also helped take us to hospital appointments and came to visit the children in hospital so we would have the chance to leave the ward to get something to eat.

“Marlene also helped practically in the home too with ironing and domestic chores which we did not have time for.

“She also spent time playing with Ellis and once took all three children out so me and Darren could celebrate our wedding anniversary alone together.

“Marlene has been amazing.”

Marlene first went to help the Worthington family in July and still helps them now when needed.

In the beginning, she came as much as the family needed. Now she sees them about once every couple of weeks.

Anna says: “It is hard being split in three different directions and Marlene was the third person that could help when we were needed at two different hospitals at the same time as doing things like needing to take our other son to toddler group.

“Our life would have been very tough without the help and support of Marlene and Rainbow Trust.

“There is no support out there when your children are ill and apart from Rainbow Trust, there was nothing else.

“The Rainbow Trust and Marlene were a lifeline.

“Marlene was the extra person we needed. It is hard enough when you have twins, never mind when they are ill.

“Marlene is very much loved in our house.

“Hugo and Myles are now 22 months-old and doing very well. They have to go to Birmingham Children’s Hospital every 10 weeks for a check-up.

“Myles has some sight but we are unsure how much sight Hugo has. He is blind in one eye and the other eye had a moderate tumour so we don’t know how much damage that caused.

“It has been tough but we are so grateful for our time as a family.”

Marlene Shirley, 55, who has been with the Rainbow Trust for almost 13 years, says: “It has been a privilege to have worked with this family and to know that I have helped out in some way.

“Anna and Darren are wonderful parents to all three of their boys and even though it has been a real struggle for them, what has been best for the boys has always been at the forefront of their minds.”