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​I couldn’t have asked for anything more. She understood.

News   •   Feb 10, 2017 09:15 GMT

Sisters Amelia-Rose and Freya-Lilly

Being a Grandma is by far one of the best things in the world. Seeing your child bring their own children into the world makes you so proud. But it is so heart-breaking when you can’t do anything to take away your child’s pain when their baby is seriously ill.

My daughter Becky gave birth to her second daughter Freya-Lilly at full term – and there were no signs that her baby’s life was in danger until she was born.

Freya-Lilly’s first bowel movement happened inside the womb during labour, which caused her to inhale meconium as she tried to breathe. At four minutes old, Freya-Lilly stopped breathing. But thankfully due to the team’s hard work they managed to get her to take a breath and then she was transferred immediately to the neonatal high dependency unit (NHDU) for meconium aspiration, and was placed onto a CPAP machine for support.

She was by far the largest baby in NHDU weighing in at 9lb 6oz, but she was one of the sickest. For two weeks, Freya-Lilly was treated at Colchester Hospital, but she showed no signs of any improvement. Her expected recovery didn’t happen and her breathing became more difficult each day. X-rays indicated that meconium was clogging her lungs which meant they weren’t able to work properly. She had become completely dependent on breathing machines and by the time she was 16 days old, her condition had become so severe that she had to be ventilated. She needed to be transferred to a neonatal intensive care unit (NICU), something that wasn’t available at our local hospital. Our only hope was to get her to a specialist hospital – and the nearest was over 50 miles away in Cambridge, The Rosie Hospital.

We arrived really late that night and were fortunately given somewhere to sleep – not that any of us slept. Then the following morning we were told about a place we could stay – it was free and just below NICU. It was called Chestnut House and was run by a charity called The Sick Children’s Trust.

I will never forget that day. I wasn’t a parent who needed to stay there to support my baby through their horrendous ordeal. I was a Grandmother who felt like I didn’t really belong there. But I was pleasantly surprised as the lady who greeted me seemed to understand my need to support Becky and her partner Scott. She understood my need to stay close and to be there for them to help. This wonderful lady said she could put an extra bed in the room Becky and Scott were given and she made me a cup of tea. And in that moment I knew that any fears I couldn’t share with Becky and Scott, I could share with the Chestnut House staff and not be judged. I couldn’t have asked for anything more. She understood.

Over the following week we watched Freya-Lilly fight. That week, Becky and Scott weren’t sure if they were coming or going – it was so hard for them to see their three week old baby fine one minute, then just not coping at all. All I wanted to do was cuddle my new granddaughter and take the pain away from her parents. It was by far the most up and down we have ever been. But The Sick Children’s Trust was there to give us some stability.

Chestnut House was a safe, private place to be when we couldn’t be at Freya-Lilly’s bedside, we were able to make our own food in the kitchen which was so important, not just because it saved us from the expense of takeaway food, but, as Becky is coeliac, it meant she could cook and eat food that wouldn’t make her ill. There was also a laundry room which meant we always had fresh, clean clothes; but it also gave the opportunity to meet other parents and grandparents who we could share our story with, and give each other support and hope which we really needed. We could also bring Freya-Lilly’s older sister Amelia-Rose to Chestnut House and she stayed with us for a few days. Chestnut House gave us a travel cot and bed sheets for her, which gave Becky and Scott a chance to be with the girls together for even a little while. A decision was made to leave Amelia-Rose with her Grandpa (my husband) which was so hard for them to make, but was done with Amelia-Rose’s best interests while Freya-Lilly’s progress was so unclear.

Freya-Lilly was later diagnosed with a rare condition called congenital lobar emphysema (CLE) which meant air could enter her lungs but couldn’t escape because of overinflation of the lobes in her right lung. Freya-Lilly fell into the least common form of CLE – she was our 1 in 30,000.

She was put onto the emergency list for lifesaving surgery to remove part of her lung – this was her only hope. This operation had so many risks, she was given a 30% survival rate because of her condition at that time and we were all so scared for her but we knew it needed to be done to give her a fighting chance at life. She was only 29 days old.

We were all waiting for a call from the ward, waiting in the room at Chestnut House and not really able to speak to each other because of worry. All I could think about was how my grandchild was in a life-threatening situation, Becky and Scott were going through traumas that I couldn’t take away from them – and I felt useless. But through Chestnut House, I could help, so I did the best I could. I made sure they had clean clothes and proper food and would pray that this precious child would have the chance of living.

When the call came from the ward six hours later, to our relief we were told that Freya-Lilly had survived the surgery. They first found a slight narrowing of the wind pipe but were confident this would rectify itself. But during the surgery they found that the middle right lobe which we knew was affected by the CLE was actually fused with the top lobe and so both had to be removed. This left our baby with a long incision wound and broken ribs which we were told would heal in time.

There was a medley of emotions – love, fear, frustration, relief, exhaustion, anger and gratitude. We knew we weren’t out of the woods yet, but at last we had some hope that Freya-Lilly would recover and we could look beyond the next hour, to the future.

Despite believing we wouldn’t get her home before Christmas, Freya-Lilly proved us all wrong. She made so much progress over the next few days; coming off all breathing support entirely and just a week after her operation she was transferred back to Colchester and was then allowed home a few days after that.

It’s now over a year since Freya-Lilly had her surgery and apart from symptoms which suggest asthma, she’s doing well.

Looking back over the last year, we remember Chestnut House fondly. Last Spring, Amelia-Rose became life-threatening ill with diabetic ketoacidosis which is caused by a lack of insulin. She ended up on the paediatric critical care unit at Colchester Hospital, and at just 18 months old she was diagnosed with type 1 diabetes. This time reminded us of how lucky we were to be given free ‘Home from Home’ accommodation by The Sick Children’s Trust when Freya-Lilly was so ill.

When Freya-Lilly was poorly, we could not afford accommodation locally. We considered bringing a touring caravan to a site a few miles away, but this was not practical. Sleeping in the car and using the food hall seemed inevitable because we were simply too far away from home to commute. Freya-Lilly’s condition was so unstable that we didn’t want to be more than a few minutes away from her at any time. Thanks to The Sick Children’s Trust, we didn’t have to make those decisions.

Chestnut House is a very special and much-needed facility; it enables parents to be there for their critically ill children at a time when the last thing on their minds is looking after themselves. It provides something that no hotel room can – a safe place to go when you are at your lowest point, where it is acceptable to cry, share your story or sleep knowing that your child is upstairs and you can be there in minutes.

Being there, just minutes from your child I believe helps them in their recovery. Having parents nearby must give the child security and a sense of safety, that’s got to make recovery easier surely.

Jan Taylor

Freya-Lilly and Amelia- Rose’s Grandma.

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