Ellianna’s Story- Down Syndrome Diagnosis at Birth

Down Syndrome Diagnosis at Birth

Most of the world believes that all moms would know ahead of time that their child may have a genetic makeup that is not the same as everyone else, but you may be surprised to know that is not the case at all.  There is a very high percentage of moms who have their world completely rocked when they recieve a Down Syndrome Diagnosis at birth.  Eloise is just such a mom and she and I have been following each other since shortly after Ellianna was born.  Here is her story of a Down Syndrome Diagnosis at birth.

The 6th of January was the day my third child Ellianna was born.

 

I just felt so excited to be meet our new little addition, the pregnancy and labour was by far the best I could have hoped for, even after going into slow labour during the worst sickness bug and having no sleep for over 48 hours.

 

I did have the test for Down syndrome, and it came back 1 in 350.  I remember at the time, I thought that was pretty high risk, but my midwife reassured me that unless it comes back lower than 1 in 150, no further tests would be offered, so I felt reassured that all was well.

It wasn’t until the midwife placed Ellie into my arms, did I suddenly see something I never thought could happen to me.

 

I saw a baby with Down syndrome.

 

I instantly knew she had Down syndrome and to this day, I still feel totally ashamed of some of my first thoughts and feelings from that very first time I met my baby.

 

I didn’t feel anything but complete and utter devastation, I couldn’t hold Ellie I passed her straight back to the midwife, who I then asked to confirm what was my biggest fear.

 

She couldn’t confirm that Ellie had or didn’t have Down Syndrome, but I do remember the midwife taking Ellie off me and looking at her saying, “babies with Down’s Syndrome sometimes have a toe gap, and one crease on their palm.”

 

She was looking at Ellie but couldn’t find any of these typical characteristics of a baby with DS, so she promised to get the doctor to come and talk to me and take a look at Ellie.

 

In my heart I knew what was going on, and didn’t need a doctor to confirm what I already knew.

 

Ellie looked completely different from my other two children, her little tongue hung out of her flat little face and her little almond shaped eyes slanted upwards.

 

To me it was completely obvious that Ellie had DS, I was just so angry that this was happening to me.

 

I had all these preconceptions about Down’s syndrome and just didn’t want this in my family.

 

I suddenly became very frightened and felt robbed of everything I should have had. I was completely terrified of our future and how different life was going to be, not just for me but for our whole family.

The doctor came and I remember his words so clear “Yes, I see a problem.” but then went on to say Down’s Syndrome needs to be confirmed with a blood test that would take 7 days. I  would also need to stay in the hospital for Ellie to be monitored until the blood results were back.

 

I remember sobbing, I was inconsolable. Zayne, my partner, was with me the whole time but remained very quiet and tried to be reassuring, but it was also a lot for him to take in.

 

I didn’t want to see or speak  to anyone , except my older sister Hannah who couldn’t get into the hospital to see me and I really didn’t want to tell her over the phone, but I had no choice.

 

Hannah has always been my voice of reason, but even this time I struggled to listen to her words. I didn’t want to answer calls or texts messages from anyone, I started thinking of excuses of what to say to people and why I didn’t want visitors.

 

I didn’t want to see anyone and I certainly didn’t want people to meet Ellianna yet.

 

The saddest part, the part I’ll never forgive myself for, is I couldn’t bring myself to take pictures of Ellie.  This is something I truly regret, I’m lucky that Zayne took the few picture we have of Ellie’s first moments in this world.

 

The time soon came when Zayne had to leave, I didn’t want him to leave me alone with my thoughts. I was not only inconsolable, but completely exhausted. The nurses insisted on taking Ellianna for the night so I could get some much-needed sleep as I hadn’t slept for 48 hours due to the sickness bug and then going into labor. I will never forget that I felt so scared of the nurse taking Ellianna for the night, (even writing this next bit is hard as I have till this day not told anyone I felt this way).

 

I was scared for them to take her from me that first night as I was terrified I wouldn’t want to have her back in the morning.

 

That’s when everything changed, taking some sleeping medication, I managed to get some much need sleep. I’ll never forget this moment as this was the moment I realized I had been completely selfish.

 

I woke up desperately looking for that plastic crib with Ellianna in it, I jumped out of bed and rushed down to the nursery where Ellianna was.

 

I just needed her with me, I looked at her thinking I’m so, so, so, sorry the guilt I felt was indescribable.

 

How could I have felt all those things about my baby my completely healthy little baby, the baby I so desperately wanted? Ellie deserved my love, just like my other children.

 

Waking up that morning without her next to me was the reality I needed, I needed my Ellie and she needed me.

 

I then threw myself into researching Down’s syndrome. I joined mother and baby groups and read blogs by other parents in similar situations. I saw this incredible community with amazing mums and dads that were very happy, living their very fulfuling lives with their beautiful children.

 

This was completely the opposite of what I had thought I was going to see.

 

I had only ever met one little boy with Down’s Syndrome before I had Ellie.  It was a few years back, and I was having my nails done in a salon. The lady next to me was with her 2 small children and her little boy that had Down’s Syndrome, he must have been about 3 and she had a younger daughter with her to who was only a couple of months old. We got talking and she told me she has 4 children, 2 of which had special needs. She also had 2 girls, I remember thinking,  WOW, this woman is super woman.

 

I was amazed by how lovely, happy, and just completely fabulous her family was.

 

By sheer chance we became friends on Facebook, It wasn’t until now would I realise how significant meeting that lovely lady with her amazing beautiful family would be to me and my life.

 

When I found myself in this situation I couldn’t navigate, I desperately needed to talk to someone that had been through it too. I did not want to talk to Zayne, not a doctor not a mid wife, and for the first time in my life, not even my big sister.

 

I needed to talk to someone that had a child with Down syndrome. I messaged her on Facebook and straight away she promised to ring me when she had chance. True to her word, she rang me, we spoke, and I explained my situation.

 

I explained how I was feeling, and she told me that was totally normal and not to feel guilty, she made me feel like I wasn’t alone, she told me she cried for weeks after she found out her son had Down’s syndrome. She also told me that you’ll look back and regret the tears and she was completely right, she even let me FaceTime her son as he was coming into say goodnight to her whilst we were on the phone talking.

 

I saw this amazing cute little boy, that came to say goodnight to his mum like any other child. He wasn’t any different than my little boy, what was I so scared of ??

 

She told me how much he had changed her life and how happy she was that she was chosen to be his mum. She also told me that Ellianna would be a blessing to me and teach me so much and show me a whole new life, Oh, and how very right she was.

 

Looking back now I actually feel sorry for the girl on that hospital bed, how her misconception  of Down’s Syndrome took away what should have been the most special time. I can’t change  the past but I can certainly make up for it in the future.

 

Those emotions I felt had to be processed, and it was completely normal to feel that way. It was okay to grieve, it was okay to be scared. It was even okay to be angry because all of those powerful and overwhelming emotions quickly turned into the most incredible, indescribable, strong love for my baby.

 

On the 13th of January the test results confirmed Ellianna had 47 chromosomes instead of the typical 46. Ellianna has Down syndrome. But by then I had already accepted Ellianna’s diagnosis, and it really didn’t come as any surprise.

 

Ellianna is now 3 months old and is more prefect than I ever thought possible.

 

She is by far the most mellow baby I’ve ever met. Her health is something I worry about as we have recently learned that Ellie has 2 small holes in her heart which might require surgery when she is older,  but I don’t  fear the future, I just know I have to be ready for it.

 

Having Elllianna has been by far the best experience in my life.

 

She has made me become the person I always wanted to be. Down’s Syndrome is nothing to be scared or wary about. I stick by the belief, ‘if you treat someone like they are ill, they will act ill’, which goes for everything in life. If you judge someone based on a diagnosis and automatically cut their life ambitions and abilities short, you will never truly see their full potential.  Everyone is different, everyone is unique.

 

I just needed my eyes opened a little more and I was completely surprised with what I saw.

 

Have you seen these awesome designs?  Click on any of the pics to be taken to our shop

 

 

 

Eloise is the mummy to 3 precious little ones, including Ellianna, who rocks an extra chromosome.  Eloise lives in Bristol England and has a partner (Zayne).  Follow Eloise on instagram @Eloisetemplar

 

 

 

 

 

Have you seen our book? This is a perfect addition to any library, especially when your loved one has Down Syndrome.