The diagnosis: Ailbe

This is our third baby so no one could accuse me of being new to this. Each pregnancy and labour has been different. Our first baby, Conor was 9 days late, our second baby Saoirse was on time and Ailbe was early.

With Ailbe he was sat in the womb like Buddha as I liked to call him from around 30 weeks.  The medics call this “flex breech”.

All the professionals said “don’t worry he will turn” I had a feeling he wouldn’t. Everything was going like the previous pregnancies. Until a routine scan. Ailbe legs were measuring shorter than the previous scan. That can’t be right how can his legs shrink? Also they were concerned about the blood flow pressure through the umbilical cord and the head circumference was small. The routine scan had suddenly become abnormal and I was having to be given a test which will say if I will go into labour in the next 48 hours and having to have steroid injections to prepare his lungs for outside the womb.

At this moment I should have been worried about the baby but I am stressing about being late for Saoirse audiogram 25 miles away in another hospital. It’s strange what you worry about when everything seems to be going wrong. Fast forward a couple of hours and I am rescanned by the consultant. Within 5 mins he is dismissing his colleagues concerns and saying we just have a short legged baby as I am small. I am 5ft7 and my partner is 6ft. We go along with this and have to have weekly scans.

The day of the birth I have a planned Caesarian. My first sight of Ailbe is him being lifted over the curtain then very quickly he is whisked away to a corner of the room. It’s always difficult to see what’s going on as I am being sewn up, but kyle is looking concerned. I wait for the cry. We hear that little cry and I desperately want to hold him but I am not allowed. A doctor who I meet later, brings him over and I give him a little kiss. The doctor said that’s the first time he has reacted to anything. He is struggling to “pink up” so we are taking him down to neonatal.

Back on the post labour ward I wait with kyle for news about Ailbe. I can’t get down there because I am in a bed unable to walk. The same doctor comes in to “talk to us” Ailbe is ok just struggling with maintaining his oxygen. However, we have some concerns. This is when I start to silently panic and look at Kyle. We hold hands and the Consultant says “your baby is showing some features that may be due to a genetic disorder called Down Syndrome” (DS for short) we have sent off a blood test which will tell us and this takes approximately 48hours. Then as he stands there at the end of my bed he starts talking about stuff which i can’t take in except for one point “its normal for downs babies to struggle with breast feeding”  then says we have a great doctor who will be your baby consultant if he has DS. I had planned on breast feeding my new baby as I had with our other babies. This later becomes one of the hardest aspects I struggle with.

Suddenly I notice how everyone is being extra kind to us and how there seem to be more people in the room than necessary. When he told us this,  Ailbe was in the neonatal unit and I was on the postnatal ward in a side room. Kyle and I are in shock. The only thing I want to do is find my baby and see him. I can’t as the staff say I am not stable enough to be moved. I send Kyle to be with our baby and I feel totally lost and helpless. This isn’t how it was supposed to be. My mind is freaking out trying to recall what I know about Down Syndrome (DS). All I want to know is how will my baby be when he is not a baby. Will he be happy, will he be able to look after himself, will he be able to talk, walk, eat by himself.
When we meet with the Consultant who will later become his doctor, she sits us in a side room and she is carrying a huge book. She has a big smile on her face and says “the results have come back and Ailbe has the t21 gene which means he has Down syndrome”

At the time we found her far too happy about the diagnosis and she hands us the book which is full of pictures of children and adults with DS. I find myself having to sound positive and happy about Ailbe having DS because I dont want to appear like I dont want him. I do want Ailbe but I didnt want him to have DS and I didnt feel able to be anything but happy with the Consultant.

Ailbe spent a week in Neonatal Unit and I tried my hardest to breastfeed him. The midwives had him on a strict feeding regime which was tube fed as he wasnt feeding from the bottle or sadly the breast. I fail miserably at breastfeeding and keep going back to that comment “downs babys are notoriously difficult to breastfeed”. This turns out to be nonsense by the way. I suddenly find myself expressing milk, being unable to say out loud the term DS or think it without crying. My usual social media drops from the face off the earth. Family and close friends start getting curious, they knew I was booked in for a planned C-Sect but I havent done my usual post on FB about our new arrival. At this stage I contemplate deleting my account. I cant cope with seeing photos of all my friends with their new “normal” babies, I dont want to have a conversation with anyone about Ailbe. I dont feel ready to talk about any of it. The midwives on the ward tell me I am dealing very well with the situation. This doesnt help I just am in shock. Every photo I take I find myself taking dozens trying to get the “right one” where he looks like all the other normal babies. I then feel racked with guilt because I am thinking this.
The obs & gynae Consultant who delivered Ailbe is very sweet and calls in to see me every day for a “chat”.

During these chats I learn 4 things;

* he delivered another baby the same day as Ailbe who had DS and the family didnt know. Apparently, this has caused quite a stir in the hospital.

* He used to work with a midwife who had a baby with DS

* out of all the genetic disorders T21 is the best one to have.

* he then went on to say how he doesnt really like the NHS “seek & destroy” policy. He ponders how many couples had terminations because of the test and the baby didnt have a genetic disorder.

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Acceptance of T21: Something Extra support group

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During the time from the diagnosis to the moment I met this amazing support group Kyle and I had been in free fall. Metaphorically I had hidden in the cupboard refusing to find out anything or talk about anything. Kyle on the other hand was on the information highway constantly trying to talk to me about disproving the diagnosis as well as finding out everything he could about DS.  He kept referring to key features shared by T21 and how he wanted to get another blood test done. 

I am lucky with Kyle as he is always supportive with me and when I told him about the support group we both agreed it would be good to go. I dont know what either of us were expecting from it but I think we both wanted to meet other babies/children with DS.

Before we walked in we stopped and I asked kyle “are you ready for this” not sure if I was. This was the turning point for us. 

The group gave us hope. Here we met 4 mums who were all having a hot drink sat around a table in a cafe. It was so low key that I thought perhaps I had the wrong place. Surely the group should be more clinical and abnormal. I just found a group of mums happily chatting and so welcoming and friendly. My previous experience of baby and toddler groups have always been about achievement and whose baby is better and always very clicky. However, I did not find this with these ladies. I found acceptance, understanding and support. Their children ranged from baby to toddler to teenager.  Hearing the same fears and questions voiced. I had just thought these were my dark thoughts I felt guilty about having. But apparently they were normal thoughts. This was refreshing and gave me hope. No longer did I feel alone.  The older children there are walking and talking and eating ! 

I didnt realise at the time but on that day I met a community that I now consider family. They have been there through the lows and highs in our journey.  The other good outcome from going to the support group was Kyle finally accepted Ailbe diagnosis.