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Liam (17 Oct 2009 - 9 Nov 2009)

liam best photo

Saturday, 17 October 2009: Birthday Surprises Liam’s sneaky arrival!!! At 1am I started to have Braxton Hicks contractions. 20 minutes later I was on the phone to the labour ward....

They advised we came in to be monitored and we arrived just after 2.30am. At about 4am the contractions gained intensity, and although they were still 2 minutes apart there was no mistaking the feeling anymore for practise contractions, this was the real thingMy emotions were all over the place because I didn't want to have my little man this early but I had the overwhelming urge to push. I shouldn't be pushing and tried not to.

Liam had other ideas and flew out onto the bed leaving even the midwife speechless for a few seconds. It was 5.10 am. Steve and I looked at him. He was pink but not making a sound so we feared the worse. The room fell completely silent as we waited to see if our son would have the same birth and death time. Suddenly there was a tiny little cry. It was so tiny I didn't even hear it. Steve did though and we listened hard to see if he would make another sound. He did, two more little wails escaped from his lips and I have to say I have never heard anything so beautiful in my life. My son was alive! He was wrapped in a little plastic bag, and a tube inserted to help him breathe. Then they called Steve over to take a look before he had to go up to the NICU.

As he said 'Hello Liam' our beautiful son opened his eyes and glanced at his daddy. They quickly showed him to me before popping him in his 'Mega Cot' and took him off to the NICU. My gorgeous brave little Miracle boy is here!!! He weighs 2lbs 4oz and is doing really well in intensive care so the docs are really happy with him :):)

Sunday, 1 November 2009: Ups and Downs...
The last couple of days have been hard. Liam has been having more downs than ups and the little bit of progress he made has been halted. Although his ventilator pressure has not been turned back up as high as it was, it has gone up and his oxygen have gone up a lot, from needing just 41% 2 days ago to 85% today. He has Laura looking after him again today, she is by far the most compassionate and helpful nurse on the ward and Steve and I feel so safe when she is around. The fact she has cared for two babies who have had t18 before also helps, even when she tells us that they didn't make it very far, her honesty makes her even more great in my eyes.

Wednesday, 4 November 2009: I don't like Mondays...
Two days ago we very nearly lost our little man. There were nurses and doctors gathered around his bed and every alarm was sounding. His heartbeat had gone from a steady 145 to almost 200, his oxygen levels were struggling to stay over 60% and his blood pressure had dropped to half the usual reading. Liam's little chest was heaving up and down and he was twisting and turning in his cot, as if he was in real pain. We decided that Liam looked like he wanted to let go. He wasn't the same baby we both have seen every day for the last 18 days, he truly looked as if he needed our help to go on his next journey. As I sat and stroked my son's tiny hands I remarked that he seemed very hot, so decided to take his temperature. The reading was 38.6, much to hot to be under the blanket some idiot had tucked round him, so we took it off. I sat with him, trying to settle him for the next hour. I wanted to say that he didn't have to struggle anymore and that it was alright to let go but the words would not come out.

Thursday, 5 November 2009: Fireworks
After Monday's downward turn, Liam has done well the last few days, so we were upset Laura called us to say Liam was still only showing Sats of 60-70%. She had spoken with the doctors and they would be there to see us when we arrived. As it turned out he seemed very peaceful and comfortable, and shortly after we arrived his Sats went up to 70-80%. The doctor was still not happy with this and so gave him some medicines and increased his ventilator pressure again to help. This brought him up to 85%, still not enough to make them happy but enough for them to let him be for now.

liam mum and dad icu

Saturday, 7 November 2009: 21 Days Today!
We have reached another celebration day. Of course every day is a celebration because I am so glad we have got to spend this time with him. When I found out I was expecting a baby with T18 I didn't dare believe we would get this far. After another couple of rough days and another blood transfusion our brave little soldier is doing well and keeping his oxygen levels up. I know from my t18 mummies that a lot of their children are in the 80's rather then the 90's, so I have asked Liam's doctor to go back to the cardiologist with a view to working with the lower figures. Maybe it will work and maybe it won't but I have to have exhausted every avenue.

Tuesday, 10 November 2009: Goodnight little warrior xx
Last night Liam chose to join his T18 angel friends in heaven and we had to lay our precious little man down to sleep for the final time. Monday started like any other day. When we arrived Laura told us his blood gases had dropped again, and they were looking to give him another transfusion. We agreed, hoping this would settle the gases and Sats. Liam had been quite perky all morning, so we thought we would act fast before things dropped too far. When we arrived back at the hospital Laura came running out and asked us to come straight in. Liam had suddenly taken a turn for the worse, and they had to up his pressures as high as they had ever been. They had also upped his morphine from 10 to 30 percent, desperately trying to calm him a little and raise his Sats.

The minute I saw what was going on my gut wrenched and I told Steve they needed to stop. Laura quietly told us that they were trying to buy him a little time, so we could spend a little longer with him. I waited anxiously, watching the numbers go up and down on his monitors, thinking all the time get away from my baby. After what seemed like hours, the morphine kicked in, and he calmed enough for us to be able to hold him, while Laura sat and vented him manually. Liam was wide-awake despite the morphine and his eyes were wider than I have ever seen them before. We took turns holding our little man, mummy, daddy, nanny and granddad, and finally his big brother Lee before he was handed back to me for the very last time. Steve and I cuddled him close for a few minutes before we finally asked Laura to stop ventilating.

I asked Laura to dress him, which she did with as much love and care as if he had been her own. Once dressed he was handed back to us for his final minutes on earth. Through all of this Liam's eyes had remained wide and alert, looking first at his daddy and back to me. He knew he couldn't stay any longer and gazed at us to the very end. We whispered softly to him that we loved him and it was ok to fall asleep. His eyes flickered shut and then re opened slightly for one final peek before he left us. Peacefully and quietly he drifted off into eternal sleep.

The last two days have been spent arranging Liam's funeral. Just when you want to curl up and die you find yourself with an endless list of things to do. We picked up his death certificate, in the same office as we had registered his birth only days before. We went to buy Liam something to wear. We decided to buy a little set, complete with shawl, that look like pyjamas. I like to think of him as sleeping and his funeral as us saying goodnight so pyjamas seemed very appropriate. The whole shop was looking across at us as we tearfully made our way to pay. I sifted through poems and music all night, trying to choose what we wanted for our little man. This time Steve was overwhelmed and so we gave up for the night and went to bed.

Liam funeral

Today I woke feeling peaceful and at ease with things. Another hard day was beckoning. Choosing flowers ended in me walking out yet again and leaving my parents to finish up. Thank heaven they are with us or nothing at all would have been done, I love them dearly and have so much admiration for them for putting aside their own grief to support us in ours. The last stop of the day for us today was to organise the balloons. I wanted to release 23 balloons for Liam, one for each day of his life, and we chose rainbow colours, a symbol of SOFT and of his T18 friends.

Liam was born on 17th October 2009 and joined his trisomy 18 angel friends 9th November 2009
Liam has now been with the angels for three weeks. Ever since our little man joined us in this world, it seems every minute that passes widens the gap between our brave little warrior and us. Steve and I still seem to take turns grieving, on the days I am in a mess he is always there to pick me up and I am there for him. Liam made us bond in a way I never thought was possible.

We are closer then we have ever been and understand each other without the need for words. For our son's sake we will never lose this closeness, it was a gift he gave us. Liam and I have already helped hundreds, (and this is no exaggeration), of people understand just what Edward's Syndrome is and I have had the honour of becoming close friends with families that are at the end, in the middle or just starting their journeys with T18. I did discover the SOFT website but at the time it seemed a little 'user unfriendly'. Since, it has had a massive face-lift, providing so much more information and real stories on our families. 

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