Ged Kirby

Where do we begin with our fairytale? Finding out we were having twins was amazing a boy and a girl one of each to add to our little family, we already had a little girl called Darbie who was two years old at the time.

Early in our pregnancy everything was smooth sailing I was offered the normal pregnancy checks at the usual dating scans but I refused them as I did for my first child I didn’t think them necessary as I would love my child no matter the outcome. During pregnancy we had a visit to the Liverpool women’s to check our baby boys heart as they thought it may have been enlarged due to the fact that he was measuring smaller than his sister but we came out of there reassured that his heart was fine we were told that if there were holes in his heart they wouldn’t know until he was born so for the rest of my pregnancy I ate a lot of protein foods to build my little babies up.

At 35+1 I was taken in to be induced this was the day after my little girls’ second birthday. At midnight on the 25th September I was rushed in to the delivery suite as during my check they couldn’t pick up my little boys’ heart beat on the monitor, soon they found him and we were off- Ged was born naturally at 5:50 weighing in at 3lbs 10 then exactly an hour later 6:50 Eiffa was born by emergency c section weighing in at 5lbs 1. 

I woke up sometime later wondering where my twins were as it seemed hours before I could see them; then when I finally did the moment I saw them my world seemed peaceful.
A paediatric doctor came over to see me and my husband and said Ged was born with abnormal features, I was baffled as to me he was this little handsome prem baby I’d never heard them words before but on reflection his sister did seem bigger to us that was the only difference. The Dr said they were going to run some blood tests and asked if we had heard of any syndromes- me being so naive I’d only ever known Down’s syndrome I replied with ‘I’ll love my child no matter what that’s all we needed to know......’
Ged had a blood transfusion at three days old as he was anaemic and by the end of the week we were pulled in to a room myself and my husband Darren, a nurse, the paediatric doctor and another doctor we were told to sit down, they gave us the news that Ged was born with trisomy 18 - Edwards syndrome it was described as a life limiting condition. We were told there were three different types and that there would be more bloods to see which one he had, full T18, mosaic or half we were in total shock we had no understanding of this and my brain instantly thought my baby is going die. We were past an out of date A4 copy of SOFT UK and told to look into it ourselves.

My heart broke we didn’t know what to do for the next two weeks while we waited for the second test results to come back, we read a little bit in to it and hoped for the best maybe mosaic or half as they seemed the best out the three then the results came in and it was full T18 and my heart broke again my words were ‘how do I bond with my son now knowing he’s going to die?’ but I walked out that room and in to see Ged. Instantly I knew that was not the case our love for this little warrior only grew stronger against the odds. He made it into this world so he’s doing amazing considering. 

We had a lot of ups and downs during this time Eiffa hitting her milestones, getting to take her home, we had a few scares with Ged thinking that we were losing him, we had him christened in hospital as he was going nowhere without his ticket to the pearly gates.

We spent 103 days in hospital with all three kids in and out, sleepovers the nurses became family to us knowing them all by name. 

Then came the day when we were ready to take him home during this time he seemed to thrive being with his family it felt amazing to have us all under one roof and such a joy that we had gotten Ged home but at the same time the most scared we’d ever felt as now we were the nurses and doctors.
Our amazing T18 warrior my heart of a lion was home with us then after a month and a half his little heart had had enough we saw the signs and took him to hospital, in the early hours of the morning our baby passed away in true Ged style fighting until eventually he fell asleep with me and his dad showing him love and letting him go in his own way. 

Our famous words were when he stops fighting we will and that’s what happened Ged was four and a half months he was a pleasure a blessing a total joy to be around one little cheeky chap. I have read a lot of other people’s experiences with their own baby’s and not just the medical side of it every child is an individual they make their own path in life their not a medical book.

We treated him like every other baby with love and compassion, hope is what kept our baby alive in loving memory of our son I write this with joy in my heart and memories to treasure I wish u well on your journey.

Living without Ged

Lockdown came a month after we lost Ged so home became a safe haven exactly where I wanted to be locked away from the outside world.

Being able to concentrate on the girls and having to plan everyday around them not having to think about what just happened to us.

We sailed through a whole year watching Eiffa grow creating a bond that would last for ever- planning birthdays and what we could do to mark Ged’s first birthday. We bought him his own star and sang happy birthday and released balloons making sure to smile for the girls.

Then on to the next milestone - Christmas which was our first Christmas at home as we would normally be with family so spending the day as a four and then some of the family joined us was another way to block it out; but then a couple days after Christmas it hit me. Life got hard counting down the days till the 11th February which marked the day of his celebration of life a day I’d like to forget but all so living every part of that day over and over again in my head. It was like being in the moment and thinking how I was going to get over this.

SOFT UK became my go to for talking to families that were now walking in my shoes and what could I do to help them try to get though their story- I felt a sense of need again.

Fast forward two years later we planned to have another baby and the girls were doing fantastic in school life, talking about Ged became much easier and things were on the up.

Then we got the amazing news we were pregnant, and it hit me all over again like a brick- the what ifs came in to play. What if this baby has Edwards? What if they don’t pick it up again? Can I do this again?

I wouldn’t tell anyone I was pregnant just in case it was going to happen again. We had the tests done this time as before with the twins we never.

Everything came back ok with them, but I was full of anxiety as this little baby was planned and I still wouldn’t believe everything was going to be ok no matter how much they reassured me until I held the baby in my arms and could see for myself if he or she was ok.

Nine months of fear and the unknown to then having a bundle of joy weighing 8lb 8oz - my biggest baby yet! And he was ok.

No matter what you have been through life still goes on around you people saying ‘aww a boy’ not knowing I already have a little boy and that I actually have four children not three of which they can see and congratulating me on finally having a boy after two girls. Soon I tell them our story and make them aware of Edwards syndrome educating them on rare conditions.
That’s one more person in the world that now knows about it, and I feel I have become a voice in spreading the word about Edward syndrome.

Not every baby comes home with their family and to make the most of the time we have with our babies creating memories to last forever are things you can think back on and have a reason to smile about.