Down ’s syndrome diagnosis just 3 hours after birth

Down ’s syndrome diagnosis just 3 hours after birth

During the pregnancy Lee and I had no idea that our child had Down’s Syndrome, we had been offered tests at the start of the pregnancy but had refused to have them based on the fact we felt blessed to have a little baby on the way and we knew that no matter what we were going to love our little one and so for us there was no point in the tests. Looking back now I am so glad I had no idea as I would have worried during the whole pregnancy about the “unknown”.  Lani came into the world nearly 4 weeks early as she had been breech all the way through and having had just 2 days before a external cephalic version (ECV) which is where they tried (and failed) to turn her. That weekend Lanis movements reduced dramatically and by the Monday morning at my regular Diabetic appointment I asked them to check her out. They realised Lani was in a bad way during the scan so they put me on a monitor to check her heart. It kept on dropping off the chart and so without going into labour (phew I have heard that hurts!!!) they took me in for a C Section. Lani was born at 9.26pm on 7^th November 2011 weighing 7lb.

They whisked Lani off to check her out and it felt to me like ages before she cried but she did and eventually they asked me if I would like to hold her. For me there was no great need to see or hold her, I know that sounds mean but I just wanted to get sown up and get out of theatre. Lee held Lani and I had a quick look at her but only for a few seconds, she was beautiful. It took about half an hour before I was ready to take her and that is when I gave her the first of many kisses. We were taken back to a private room which I thought was very nice, en-suit bring it on. There Lee and I started to bond with our new perfect little girl, the midwives helped me to Brest feed and Lani fed for about half an hour which was great.

 At 12.30 there was a knock at the door and expecting to see the midwives again as they had been in and out constantly we were surprised to see two doctors. They came in and asked us how we were feeling, checked Lani over and then told us that they strongly suspected that our daughter had Down’s syndrome. They told us that there were 3 main indicators of their diagnosis, firstly Lani looked Down’s – she has almond shaped eyes, Secondly Lani had low muscle tone (she was very floppy) and thirdly Lani had one single crease on the palm of her hand.  They told us they were running tests and asked if we would like more information, we didn’t, all we wanted was to be left alone. We both cried it was such a shock, I at that point had no idea what it all meant, I didn’t have lots of questions because how can you know what you need to know if you don’t have any experience. 

I stayed in hospital for 8 days with Lani which was such a positive thing as they took time to establish exactly what her needs were and checked out the list of possible health problems.  I felt that we, as a family were properly taken care of and no stone were left unturned. The midwives were a complete blessing as every time the consultants explained something the midwives then re-explained it in a way I could understand and cuddled me and wiped my tears away when I was struggling. Looking back struggling with what we were told was totally understandable; it was such a new world not only of the Downs Syndrome but even being a parent.  At no point in time did I ever, or have ever, thought as Lani as anything apart from “our perfect little girl”. 

Question of the Day

Q – Does Downs Syndrome run in family’s? 

A - Most cases of Down syndrome arn’t inherited. When the condition is caused by trisomy 21 which is what Lani has, the chromosomal abnormality occurs as a random event during the first stage of pregnancy. We have also been told it’s no ones fault, it just happens ......only 700 babies with DS are born each year.

Blog diary

1^st October 2012

Morning

Today Lani and I went to the play group at the local school, its only on for an hour but I think it gives Lani a good opportunity to play in a mainstream environment and dependent on what happens in the future if we decide to go down the mainstream schooling route or even a mixture of mainstream and special,  it will mean Lani has made friends and the other children will have known Lani for a few years which will hopefully help them to be more tolerant and not bully her which is a major concern to me. Also it helps me to get to know some of the mums in the local area, we chat while the kids play with toys that are much more fun than the toys we have at home!!! 

When we get home I always give Lani time to play, today I have penned her in to a toy circle, she is sat in the middle of all of her toys so no matter which way she turns she will have something to do. I try where possible to choose toys that Lani can learn from so for instance we have a bucket of farm animals and we may play farms with her and moo for the cows and baaaa for the sheep then we take her out on a walk where we can see sheep, cows, horses and pigs (I have no clue if this works but I will keep on doing it so she knows – I must confess that most of the time when we walk Lani sleeps lol so who knows if she gets anything out of it. 

I have some funny little quirks and during the day I don’t have the TV on at all, sometimes the radio but very quietly. The reason for this is that I want Lani to hear me and her toys and I feel in a quiet environment she is more likely to not be distracted. I talk to Lani loads and sing to her, we do however watch Mr Tumbles a few times a week and she loves it. Mr Tumbles uses Makaton sign language throughout his show so Lani gets to see not only us using it but other people too. I have to admit that it has been a great way for Lee and I to learn it too. I will be talking about Makaton later in the month to help give people a better understanding of what we do and how it works. 

Afternoon

This afternoon Lani has had a long sleep and then we went out for a 4 mile jog, fresh countryside air does wonders for the sole. We stopped at our local farm to see the sheep, pig and alpaca’s, Lani managed to stay awake today so we I lol make pig noises and sheep noises but we have never heard what alpaca’s sound like they just seem to munch on the grass. I believe it is so important to help Lani to relate to the toys and book we show her by trying to find the things we see in the home outside in real life. I would hate to be caught by the farmer making the noises I would look like a right numpty. 

Evening

After Lani’s tea and before bed we will do some physio with her, Lani does 10 sit up’s a day on her exercise ball, supported kneeling exercises, reaching behind her (turning) exercise, sitting, rolling and her two favourites standing and going on her slide.