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Our beautiful Eloise has Downs Syndrome

Well as the title says our beautiful baby Eloise has been diagnoised with Downs Syndrome at 10 days old.

After having an amazing 4hr birth and home 3.5hrs late I thought everything was fine and dandy and started to settle in at home with our new little family.

When Eloise was 2 days old two midwifes came to visit and did all the normal checks. The following day my GP came to my house to check her over which was all fine and nothing picked up. On the Wednesday I went to the clinic to have her weighed and she had dropped 9% body weight and gone down to 6lb 6oz.

I told the midwife that she was really sleepy and floppy and was really hard to wake and feed her (breastfeed). Midwife told me to strip her down, tickle her, wet cloth anything to wake her and feed her for 45 mins.

Feeding was becoming impossible, she was just holding my boob in her mouth and not even sucking. I decided to express so I could see how much she was having and it helped. I got her weighed again last Saturday and she had put weight back on, so expressing was working! I was told I need to get her weighed again on the Monday as she should be back to her birth weight......... again nothing picked up!!

On Monday when Elosie was 10 days old I went to the clinic and said that she is feeding really well from the bottle with my expressed milk but I really wanted to get her back on to me as by the time I had expressed, woken her, fed her, washed everything up sterilised it, it was nearly time to start again (as I have to feed and wake her every 3hrs). The midwife asked if I would like to see the breast feeding lady at the hospital which I said yes to. The midwife called the hospital and I was able to go straight up there.

Monday 30th January then turned into the worst day of my life. We ended up going for a breast feeding chat at 930am and didn't end up leaving until 830pm that evening. After struggling to get her fed and that fact she was so floppy and not interested in feeding, the breast feeding lady got a nurse, which then turned into a neonatal nurse seeing Eloise and then a consultant. Eloise was diagnosed with Downs Syndrome and the signs were there and should have been picked up at birth!! I had spent 10 days battling with a baby which wasn't feeding and losing weight for a reason.

Elosie had lots of tests done on Monday which were all fine (ECG, blood pressure, bloods taken and oxygen levels), her hearing is also fine, which is great!

We are still awaiting the results of the blood test to confirm which type of Downs she has and also a scan of her heart.

It has been the worse week of my life but each day has got a little better. I am grieving for a baby I thought I was going to have but at the same time totally in love with our darling Eloise.

I wanted to post sooner rather than later so that I can just move forward and in time when I post photos or we chat about development it will become apparent that she does have DS.

When I had my 12 week scan my downs results were 1 in 6,200 chance of Downs Syndrome and I was that one.........!! so just really unlucky!! If I had found out whilst pregnant I wouldn't of had an abortion but I would have had months to come to terms with it, rather than the shock we had on Monday.

Everything is so raw still and I feel like I'm in a dream but I will be ok, just need to make some adjustments and things will be a little different for now. I have lots of friends and support and just want to start enjoying and showing off my new baby girl image

On a lighter note I have invested in a double electric breast pump (??265) which is great and cutting my pumping time in half. It comes with a belt so you can pump hands free.......... Its hilarious, so you can do your house work whilst expressing!! Hope the postman doesn't knock one day while I'm pumping away!! Lol......... image Would def recommend the pump though if anyone else has feeding problems, it's the Medela Freestyle!

Anyway need to start pumping again......... Congratulations to everyone else and hope you are all doing well.

Lots of love

Rachel and Eloise xx

PS - I have had about 3hrs sleep in last 24hrs so please excuse spelling, etc!

Photo attached of the piggy enjoying mummys milk!



  • G/C. Rachel, I can't imagine how difficult it was to find out at 10 days. Really feel for you. However, she is gorgeous and all yours. It sounds like you are strong and finding a way through the feeding issues etc. image I work with young children as a speech and language therapist, and there is a lot of support out there through Child Development Centres, and the Down Syndrome Association is extremely supportive, with very good parent networks. There is also a lot of research into learning, talking, reading etc and excellent early intervention options. Stay strong. Sending you love and hugs.

    Lu xx
  • G/c

    Just to say your daughter is totally gorgeous! Such a cutie x
  • Thanks ladies image

    Yes Lu the support and info so far has been amazing and there is a facebook group called which has also really helped.

    Each day is getting better just the shock of it all at the lucky to have her thou image

    Rachel xx
  • G/C from DIM. Eloise is gorgeous! I work with Children that have downs and they are the most loving children I have ever met. I had to just say that she's beautiful and I hope everything goes ok for you all. Many parents of the children I teach say they had to grieve for the child they thought they would have, but on the other hand they also say they wouldn't be the child they are if they didn't have downs.

    Lots of baby love.

    Mrs Hugs x
  • I'm sorry that it took so long for them to pick the downs up as itmust be tough to then need to adjust. She looks absolutely gorgeous and I'm sure will aways do you proud.

    When you are ready there will be lots of people with inspirational stories for you along with lots of support.

    Big hugs to both of you. Xxx
  • Gosh what a shock that must have been for you, and such a shame you had to struggle on for 10 days without anyone noticing!

    However I must say she is just adorable, with beautiful eyes!

    I hope each day continues to get better for you.

  • Oh goodness Rachel, what a shock at 10 days and after being seen by so many professionals, but Eloise really is gorgeous - such beautiful eyes and I am sure she will continue to bring you so much joy.

    Big hugs

  • She is beautiful! Congratulations on the birth of your daughter. I can only imagine the shock you must have had, and the worry and upset that you will go through due to your daughter's diagnosis. I just want to say though, you are in for a world of happiness and wonder with your little girl. I am a teacher and have worked with several children with downs syndrome during my career and you have so much to look forward too. There will be challenges but also so much love and a huge amount of pride when you see just how much she will achieve. There are some brilliant support groups out there so make sure you surround yourselves with support. Enjoy every second with your gorgeous girl xx
  • G/C from Due in Aug 2012 but just wanted to say what a beautiful picture that is of your daughter.

    Hope all the tests on her heart go well.

    I have recently had Nuchal Test results back that give me a 1.5% chance my baby will have downs syndrome. Im having an amnio test at 16 weeks to find out for sure. 1.5% does sound like a small chance but is deemed a high risk! Your % chance must have been something like 0.000015% so i am high in comparison.

    When i got results was a very dark few days as already felt like id lost the baby i dreamt of having.. even though all ive been told is there's a "risk" but its hard to block that Percentage out of my head. But for now all i know is that ive had a few scans and seen my baby moving around and its tiny heart beating and im already so full of love for him or her no matter what.

    Just wanted to wish you all the best and that your beautiful daughter will grow up and make you proud no matter what. x
  • Just wanted to send you support and encouragement, you seem to have already coped so well with the shock. I still can't believe it wasn't picked up earlier. She is so beautiful in the picture. I hope you have had an easier few days. Keep us updated with how you are getting on x
  • Congratulations on your beautiful girl! She is gorgeous. I can only imagine what a shock it must be to find out this but you seem to be coping brilliantly and sound like a fantastic mother. Like you say, you are grieving the child you expected so be kind to yourself. You already have worked out that your love is unconditional, she is very lucky to have you. Wishing you all the very best and hope the tests come back ok. X
  • Eloise is gorgeous hunni. Sorry it took such a long time to be diagnosed but she will do you proud.sending you lots of hugs and Lenny sends Eloise milky kisses. Xxxx

    P.s haha love the breast pump part of the story. Lets hope no one walks past and stares in the window whilst you are pumping. I have the medela single electric pump. Lenny is not getting on with bf so he is on mainly formula and a little bit of bm, but it's so tough finding the time to express so you are doing amazing xxx
  • G/C from Feb but I wanted to say that Eloise is beautiful.

    I can only imagine how hard this has been for you, but you sound a lovely, kind Mommy and I am certain your girl will do you proud.

    Take care of each other xx
  • G/C but I must say, your little Lady is beautiful. I can't believe it took them 10 days to discover that she had Downs. That is disgraceful!! I just wanted to let you know, as Im sure you do, that having Downs does not mean them having a life half lived. My Niece has Downs, and there is nothing that fiesty little 4 year old will not get up too. And my husbands Uncle had downs, and live a very forfilled and happy life right up until his late 60's!! You sound like an amazin Mummy and your little cherub is sure to thrive with your continued love and support! image
  • Thank you so much for all your lovely messages image

    Well what a difference a week makes!! I feel SO much better and now i'm over the shock of everything I just feel like the old me again image

    Eloise is fine and dandy and has gone from 6lb 6oz to 7lb 8oz in two weeks........ PIGGY!!!Im still expressing every 3hrs and just about keeping up with her feeding but it is hard work but the best thing I can do for her at the mo and its certainly paying off with her weight gain!

    Ive seen and spoken to lots of different people in the last week and feel really positive about everything now. My GP also called to apologise for not spotting anything!

    The early intervention plans that are put in place for children with DS seem great and providing Eloise's health continues to be ok, she will be fine.

    There has been 4 other babies in my area born within the last couple of months with DS and arrangements have been made for us all to get together on the 20th which will be nice.

    flamingobabyuk - Good luck with the amnio, please let me know how you get on. Have a look at on facebook or online, its great imageI am now an expert on DS now so if I can help in anyway please let me know x

    CW - Hope you are getting on ok and Lenny is being good boy x

    Lots of love to everyone and keep you posted on piglets development image

    Rachel xx

    Photo below of dink dink ready for shopping with mummy!

  • Hi

    Firstly, huge congratulations on the birth of your beautiful daughter, Eloise. Secondly, I too have a little girl with DS called Freya who was 1 on 13th January. We too had the Nuchal fold scan and it came back 1:10000 so like you were that 1. Freya spent 2 weeks in special care when she was born as she had trouble feeding and it was whilst she was in hospital that they detected Freya had a serious heart condition that required surgery. Freya had surgery at 15 weeks old and I can honestly say it was the darkest time of my life. Now however, Freya is a happy one year old, who is sitting up and enjoys playing with her big sister.

    I won't lie and say things have been rosy but I wouldn't be without her. Freya has taught be so much and I only have to look at her and she melts my heart. If you want to know anything, just message me.

  • Seeing your happy post made me smile and cry some little happy tears too! So glad youre feeling better and that Eloise is doing well.

    I will let you know how my test goes. Thank You.

    Rachalow and P_and_Mini_P:

    Amazing really that despite those odds you both had babies with Down Syndrome. I know you have both had a big big shock finding out this way but i just wish i had never had the nuchal test as have been wondering "what if" ever since.. wish id been blissfully unaware of this evil 1.5% risk thats now sat on my shoulder 24/7 saying "youre born is going to be born very unwell and disabled"

    I pray my amniocentesis results come back clear but if they dont both your posts are really inspiring and i wish you both the very best with your little girls image xx
  • Thanks Danielle, its nice to know of other mums on here to chat too and pleased Freya is doing so well image

    I have met up with 5 other mums in my area all with babies under 6 months with DS and it was great to see them all just being 'normal' babies. Sitting up, smiling, kicking around, etc image

    Eloise is doing great and piling on the pounds and has now busted into her newborn clothes..... bye bye tiny baby!!

    She has also started to feed from me during the evenings, so so proud and pleased! Hopefully in time she will be able to feed from me 100% of the time but for now I will continue to express.... Zzzzzzzzzzzzzzzzz, so boring!! lol

    Eloise has physio on Thursday and a couple of other appointments next week. The level of care is so much better now we are on the right track!!

    Flamingobaby - Let me know how things go and will be thinking of you xx

    Thanks again for all your lovely messages and hope everyone and babies are doing well.

    Rachel xx

    Piglet 4 weeks old - 'Hello' image

  • Crikey........ thats a big pic!!.... sorry about that! LOL
  • She is sooooo gorgeous. Missed the lasted ate, glad things are getting better and that you have support that you should get. Good luck with Physio and well done for continuing to express. I hope she starts to take more feeds from you soon.

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