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Fiona's story


On 5 May 2015, our whole world shattered around us.

In January, I found out I was pregnant and my husband, Simon, and our 3-year-old son were absolutely delighted when I told them. After some complications we had an early scan and found out I was six weeks pregnant with non-identical twins. Shocked but ecstatic, we started to plan for our new arrivals.

Our eight and 12 week scans went perfectly and we were told our babies were due on 24 September.

Fiona

When we went for the 20 week scan, I was extremely anxious and mother’s intuition told me something was wrong. At the start of the scan, Twin A (Innes) was lying awkwardly so the sonographer said she would go back to him. Twin B (Freya) was doing great. The sonographer went back to Innes and I could see on the screen he was measuring significantly smaller than Freya.

“I’m just going to get my colleague,” the sonographer said.

These were the words I had dreaded and I burst out crying. Simon held my hand and kept saying everything would be fine but I knew differently. The sonographer returned with her colleague and then a member of the foetal medicine team and resumed the scan.

One of the doctors, Dr Tydeman, appeared and broke the fatal news: “Your baby doesn’t have any kidneys.”
After the scan, we met in a room with the doctors, nurses and sonographer to learn more about Innes condition – bilateral renal agenesis – and to talk about the next steps. We all had tears in our eyes and I found myself comforting the sonographer who kept apologising to me.

Dr Tydeman told us that although Innes had no kidneys, his heart was formed correctly. His heart wasn’t beating properly and he had no amniotic fluid around him. I turned to Simon and he was as white as a sheet. I had no words of comfort for the father of my children but I could tell that he was totally broken.

The doctor then said that there was no reason that our other twin – Freya - would not grow up into a healthy child. He said to come back tomorrow for more scans and we’d talk about a way forward.
We had only told our family and a few close friends that I was pregnant and decided to wait until the next day to tell people what was happening. We had a sleepless night and cried plenty of tears.

We returned to the same scan room the following morning. We had wanted the sex of the twins to be a surprise but now things had changed we decided we’d prefer to know. Unfortunately, because Innes had no fluid around him, we would only be able to find out his gender when he was born. We found out that Freya was a girl and that she was still doing well. The scan lasted two hours because they had to confirm Innes’ diagnosis and gather as much information about him as possible.

We returned to Dr Tydeman’s room. He was straight to the point with us – which we really appreciated - and told us that there was a high risk of preterm labour. The best case scenario would be that Freya was born healthy and we would get a few minutes or hours with Innes if the pregnancy progressed to the delivery stage. The worst case scenario would be if Innes passed away in the womb, there was a chance he could take Freya with him. Dr Tydeman was quite sure the twins didn’t share a placenta making this outcome less likely but it was still a possibility.

It was all so much to take in – in 24 hours I had gone from expecting twins to not being sure if I’d take either baby home. I had no idea how I would explain all this to their three-year-old brother.

From that day on, it was all about keeping the twin in for long enough to give Freya a chance of survival. One of the most difficult things was explaining to people what was happening. A lot of the reaction was simply what we didn’t want to hear. Some people said that delivering Freya would be a reward but it doesn’t feel that way when your son is going to die.

Simon and I spent hours discussing what exactly we’d tell their brother, David. We decided that we would have to be honest with him; after all, he had known there were two babies. Our three-year-old son dealt with the news better than most adults. He decided that that Innes would be the brightest star in the sky. Actually, the prediction became true as Innes now has three stars named after him.

On 16 July I woke up at 3.00am with contractions. I could feel Freya moving but the contractions were not regular. I waited to tell Simon until he woke up because I knew what we were about to face.

I didn’t want to go to the hospital because I knew that I had to be in full labour in order to have the c-section. I sent Simon to work that night and an hour after he went my waters broke. There was no going back now.

Arriving at the hospital, I felt calm but my blood pressure told a different story. Luckily we’d had a case conference a few days before and the staff on duty had read my notes. Our midwife Yvonne was fantastic and stayed with us long after her shift ended. The midwife that took over, Helen, will always have a special place in our hearts because of the gentle way she treated Innes after he arrived.

The doctors had planned to get Freya out first because being ten weeks early, she would need to go straight to the neonatal unit. Innes beat his sister to it though and arrived three minutes before her.

We spent time holding, kissing, touching and smelling Innes. We wanted to take him in so we could treasure our memories with him. We had almost four hours with Innes before his heart stopped beating and he passed away safely in his daddy’s arms.

Freya weighed 2lb 6oz at birth although this soon dropped to 2lb 3oz. She was a fighter though and kept amazing everyone with her progress. Being on the unit was hard – I was heartbroken that my son had died but my daughter needed me by her side and David needed his mum more than ever. My emotions were everywhere at that time and I felt like I was running on autopilot. We spent 32 days with her on the neonatal unit.

We had Innes’ funeral on 3 August. We kept it very private. I don’t remember much about the day but I remember how proud I felt travelling in the same car as my precious boy. I also remember looking at Simon as we arrived at the crematorium. My strong, 6ft husband who had held me together since that fatal scan was finally breaking. He refused to get out of the car at first but then we both carried our son’s coffin in together. Our boy had taught us so much about courage and dignity and we would repay him by acting the same way.

I remember sitting down in the crematorium and my sister putting her arm around Simon and I and kissing us both. It seems like such a small gesture but it meant so much to me. After the funeral, we went to my mum’s house and let off some balloons that my sister had bought for Innes. This was another lovely thing she did for us. We then went to the hospital and held Freya – it was such a comfort and helped us to feel closer to Innes.

Two years on, it still hurts just as much as it did then. Recently, we’ve started to enjoy life as a family again. David still speaks about his brother a lot and Freya calls him “her Inny”. Some days are harder than others but I have children and want to teach them that it’s ok to be sad but Innes would want us to talk about him with happy thoughts.

Sometimes I look at Freya and my heart breaks for her and what she is missing but I know she is a tough, brave girl and will take it all in her stride as she gets older.

Taking things one day at a time is a really helpful way to manage things. You never heal but you learn how to deal with it differently.

This story was shared for Baby Loss Awareness Week - find out more about the campaign here

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages

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