Down syndrome

Dear mama……


I’ve chosen today to release my first post as it’s the anniversary of the eve of the scan we had that tried to flip our lives upside down. Up until this point my pregnancy had been progressing relatively well. They had discovered I had low levels of Papp-a, which is a pregnancy growth hormone, at my 12 week scan (I’ll talk more about Papp-a in another post sometime) and we’d been told I’d have some extra scans later in the pregnancy to monitor growth. 
We went along to the scan at 20 weeks feeling very happy, especially as I’d been feeling lots of movement, we were excited to find out if Elisha was having a baby brother or sister! 

Little did we know we were embarking on a journey that has been life changing yet remarkably ‘normal’ at the same time, filled with glimpses of sadness and despair but overwhelmed with joy and hope. Zephaniah is now 8 month old and has already taught me so much and opened my eyes to a different world. 

Here is what I imagine he would have wanted me to know as I prepared for that scan. 

Dear mama 

It’s me, Zephaniah, the baby you dreamt about before you and daddy even got married, the little bean that you have felt jumping around for the past 4 weeks. You are going to see me tomorrow and at the moment I’m not very well, the doctors are going to tell you that I’m not going to survive, that I have lots of fluid around my heart, lungs and brain. They will ask you multiple times if you want to end my precious life before it’s even began, even insinuating that it would be the better outcome, but I know you would never do that. 

Please don’t grieve for me and worry because I’m going to be fine, you are going to bring me home like you planned in about four months time. 

I know that you will want to know everything you can about me so you will decide to have a test and on Friday you will get a phone call to tell you that there is a little bit more of me to love than the typical baby. I have an extra chromosome! 

I know it’s going to come as a huge shock and you will have a million thoughts running around your mind. You will feel numb and cry and wonder why this is happening, but don’t be scared of me or my extra chromosome, everything will be okay and don’t be sad or sorry because this will be a happy journey. 

Don’t read about all the things they say a person with down syndrome can’t do, they don’t know me and all the things I will achieve in my life. 

Don’t read about all the terrifying medical problems that I could be born with because even though some of my friends will face those battles, thankfully I won’t. 

Don’t listen to anyone that tells you I won’t be able to breastfeed because I will, I’ll do all the usual baby things that you have planned. 

The test won’t show you how beautiful my eyes and smile will be, how chubby and squishy my cheeks will be, how excited I will get when I see you, dada or my big sister. It won’t tell you that I will love music and swimming, and food.  It won’t tell you how much joy I will bring to people and how happy I will be. 

Mama, what I want you to know is that I’m going to teach you so much. 

About faith, God says ‘For I know the plans I have for you,plans to prosper you and not harm you, plans to give you a hope and a future’. I am going to do so many wonderful things and make a difference in the world. I will have hopes and dream and ambitions that I will achieve. 
About patience, I might take a little longer to do things sometimes but I’ll get there and you will feel so much joy and happiness when I do. 
About acceptance and about celebrating everyone’s differences. 
About love, and what perfect love looks like through the eyes of another child. 
You are going to find and meet lots of others on a similar journey as us, some in real life and some online, some further down the path and some who are yet to even imagine that this will ever be their road to walk. A wonderful community of warrior mamas, all united in their love and determination for their own babies. They will cry with you and celebrate with you. 
So don’t feel alone. A whole new world is about to open up to you.  
I know the next few weeks are going to be tough for you mama, but hang in there and keep holding on to that faith you have and know that I’m safe in here and I can’t wait to see you.  
Lots of love 
Zephy
Ps..when we are out and about together, no one will notice my extra chromosome because they’re too busy looking at my curls! 
Pps..this won’t make much sense now but…eat your Christmas dinner before leaving for the hospital 😉 

Down syndrome

Down Syndrome and Breastfeeding Support

I have drawn upon my experiences as a breastfeeding mum to a baby with Down syndrome, a breastfeeding helper and a doula to highlight some of the ways to successfully support families.

1. Say congratulations! In the same way you would congratulate any new parent. Don’t say things like ‘I’m sorry….’ ‘Oh no….’

2. Make a safe space for the parents. They may have had a prenatal diagnosis and have had weeks or months to adjust to their unexpected news, or they may have found out postnatally so whilst promoting positive language it’s important to let them safely sit in their feelings which could range vastly from parent to parent. Whilst we don’t want to promote negativity we also don’t want to be dismissive of people struggling to process their news.

3. Back to basics. As with any baby start with position and attachment. Along with some issues that may occur as a result of the baby having Down syndrome, the baby and mother will still face the same challenges as anyone else so those should be worked on and eliminated first. Often the usual challenges are overlooked and then blame is placed on the baby having Down syndrome.

4. Language matters. Avoid using the terms ‘downs baby’. Within the Down syndrome community a person first language is preferred so ‘a baby with down syndrome’. Also avoid making generalisations about babies with Down syndrome as with any baby/child they are their own person. There are some fantastic language cards available at https://www.languagecreatesreality.com

5. Recognise that it can in some cases take longer to establish breastfeeding in a baby with Down syndrome and sometimes there is a journey involving tube, bottles, pumping etc before transitioning to feeding directly from the breast and some people continue to use expressed breast milk. It often takes up to 3 months to establish feeding directly at the breast and I’ve seen it as late as 6 months.

6. Familiarise yourself with common issues that babies with Down syndrome face such as low muscle tone, tiredness etc.

7. Make sure the baby’s red book has the correct Down syndrome insert with the separate growth chart to avoid any concerns over weight gain etc.

8. Have signposting information to local or online support groups. It can often be a lonely and confusing time and from experience families sometimes feel alone and isolated so to have someone to signpost them at this stage is so valuable. Some fab support resources are http://www.positiveaboutdownsyndrome.co.uk and http://www.wouldntchangeathing.org

9. Avoid leading with intrusive questions around whether the family had any prenatal testing unless they raise it and want to talk about it of course.

Other resources from my blog

https://chromosomesandcurls.wordpress.com/2019/08/03/breastfeeding-resources-inc-down-syndrome-specific/

https://chromosomesandcurls.wordpress.com/2018/08/01/ten-tips-for-breastfeeding-a-baby-with-down-syndrome/

https://chromosomesandcurls.wordpress.com/2018/08/07/how-breastfeeding-can-help-your-baby-with-down-syndrome/

Down syndrome

Quality of life?

There’s a phrase that is often used in relation to a prenatal diagnosis and the phrase is ‘quality of life’. If you read comments on any articles or post surrounding prenatal testing, including especially the latest ones regarding Emmerdale, they are littered with talk of ‘quality of life’ and this being a reason why not only would they personally choose to terminate a pregnancy, but why everyone should and that it’s selfish not too.

The problem with ‘quality of life’ is it’s entirely subjective.

To the person living in a mansion with an abundance of outdoor space, what kind of quality of life does someone living in a 1 bed flat have. What if those living in the cramped flat are happily married with a beautiful baby and feel sorry for the lonely single person living with all that space and no one to fill it.

What if a non disabled person feels someone in a wheelchair has less quality of life than them, but the wheelchair user is a successful sports person and travels the world and the non disabled person has never left London.

Who decides what ‘quality of life’ means. We can only measure quality of life by comparisons with our own lives surely.

You see what I’m trying to say here.

But what about those babies that could have an awful heart problem and need surgery. Well yes they might have to have a surgery then they mostly get better and carry on having a fab life.

I’d challenge anyone to try and say that my son doesn’t have ‘quality of life’. Living the life of Riley more like.

It genuinely baffles me now when people use ‘quality of life’ in a discussion around terminating babies with Down syndrome. I know why they think it, I might have thought it myself once upon a time.

I suspect what they mean, and may not want to admit is they are scared about their own quality of life. They think a child with a disability is a burden, a problem, something that will hinder their lives going forward, perhaps cost them more.

It again comes back to the fear of the unknown. The fear of something that there is a misconception and a biased towards.

When people start talking about quality of life in regards to Down syndrome I really implore them to reach out and speak to actual people with Down syndrome. There are many self advocates out there talking……who is listening to them? There is an entire community who dedicate our time to shouting from the rooftops the worth of our children and to show them the genuine quality of life that our children and us are privileged to live. We can’t all be wrong eh?

Down syndrome

10 Zoom Therapy Tips for Parents with Preschoolers

With covid-19 seemingly sticking around for a while and zoom/online events now the new norm, you might find that some therapies that used to be in person are now online. You might even be new to therapy and jumping straight into an online session. We have been fumbling our way through weekly sessions for the past few months and here are a few tips from a parents perspective! (Some serious and some lighthearted)

1. Lower your expectations, then lower them a little more. It’s unlikely your kid will sit nicely and cooperate for an entire session so try your best and try not to worry.

2. Try and find a quiet space with no distractions. Easier said than done I know. We’ve tried various techniques in our house including setting up a table in the hallway, sitting on the bed, at the kitchen table. Each comes with its challenges. We have twin baby siblings who are huge distractions so I try not to do it in the same room as them. Our latest success was trying it in my friend/neighbours space who is child free so there is nothing distracting or noisy. This may be difficult depending on current Covid guidelines!

3. Try to get a scheduled time that doesn’t clash with nap time/mealtimes if you think you kid will struggle with a change of routine that day. If you think it will cause a big issue, speak to your therapist and see if you can move slots.

4. Keep the snacks/drink handy. I’m not sure what the therapists think of this but I find it keeps Zephy occupied and interested in between other kids having their turns.

5. Make suggestions! If part of the therapy isn’t working for your kid such as a movement song they aren’t interested in, or a theme they don’t like, see if they can adapt it to your kid. We had success with this in our sessions. Both boys had an interest in pirates so they worked that in and both of them engaged more. We also trialled breaking the session up and having an individual 20 minutes instead of a group session of 40mins to eliminate the waiting time.

6. Try not to worry about how much is done with your kid during the actual session and think of it as training for yourself to learn activities that you can replicate during the week when it’s quieter, less stressful.

7. If you need resources for your session don’t leave it to the last minute to grab them as you can guarantee you won’t be able to find the baby doll and the hairbrush and the pot of playdoh at 10:28am when your session starts at 10:30am so try to keep it all in a bag and have it ready and set aside.

8. If you have to make your own resources and it involves printing and laminating and the thought of that is overwhelming, speak up, ask for help, you may hit the jackpot and have amazing therapy partners who will kindly offer to do it for you!! (Thanks Sharon and Ruth, your kindness wont be forgotten)

9. Don’t compare you child to the other in the session. It can be so demoralising and demotivating to see another child sitting nicely and completely the activities of speaking well if you aren’t seeing the same results. Be kind to yourself. All the children bloom in their own time in different areas (talking to myself here!)

10. Have all the chocolate and wine….you deserve it.

Down syndrome

It’s a Zephy thing…

I got in the lift at Balham station alongside another mum with a toddler in a buggy. He leaned forward and pushed the alarm button. His mum quickly moved him away and apologised, sorry he does this all the time. I smiled and said don’t worry my son is the same. Zephy has a thing for pushing the alarm button in the lift at home. I can see the appeal, it’s a bright coloured button that makes a sound when pressed. As with most of his behaviour that I try to curtail, the same thought flashes through my head, it doesn’t linger there but it’s there nonetheless. Is this a ‘Down syndrome’ thing. Is he doing this because he has Down syndrome or is he doing this because he’s 3. I guess what I’m really thinking is will this be a phase or is he still going to be pushing this alarm in 10 years time, is this a behaviour that makes him different to other children, is this something only I am dealing with.

It started when he was born and in the special care unit (probably even in pregnancy if I’m honest). Anytime there was a test result or something going on with him…his sleepiness, his oxygen levels, his nappy rash….I’d quietly almost whispering say to the dr or nurse…is this because he has Down syndrome. The answer was usually no, it’s because of xyz. I soon learned that him having Down syndrome was almost a bit of a non event in the special care unit. They were there to treat his clinical issues and that’s it. There was certainly no big sign over his cot saying ‘T21 here’ like I’d sort of expected when I was pregnant.

It’s carried on ever since. It’s just a niggling little voice that appears from time to time.

So I absolutely love it when I see everyones typical 3 years old doing the same kind of stuff Zephy does. Tell me more about your child that throws his food on the floor, moan to me about your child that has crayoned on your wall and floor. Got a kids that pushes doesn’t share…..I’m all ears. Carry on sharing the pictures of mess and destruction as I love it!!

Down syndrome

The baby group

We haven’t been for a while but since our schedule has changed we are free again to visit ‘the baby group’ as it’s known in our house. It’s an SEN group in our area and often the first place a parent will come with their baby who has been diagnosed with something prenatally or at birth. It’s relaxed. The babies play and someone leads some singing, the older babies have a snack overseen by a speech and language therapist. Someone makes you a cup of tea and everyone gushes over your baby. It was a lifeline in the early days for me. I remember the first time turning up and not knowing what to expect. There was other babies there with Down syndrome and some older kids and some babies with other disabilities and issues going on and it was hard to see but opened my eyes to a new world. I used to take along Zephy’s big sister who was 2 at the time and she loved to play with the babies and toddlers. Not once did she ever ask about their differences. It was so lovely so I’ve been really looking forward to being able to go back. Zephy is now the big boy. I still get my cup of tea and now my twins play alongside the other babies. Zephy now plays with the same things Elisha did at his age. He heads for the play kitchen and pretends to eat and make a cup of tea. It’s time to sing, a little girl who is an older sibling hangs around in the background not wanting to sit with the babies. Zephy catches wind of her and is off like a shot, a playmate for him. Someone he can relate to. Maybe she reminds him of Elisha. She takes his hand and leads him to play and play so beautifully. They make food and give drinks to baby dolls and wear colanders as hats and play with a giant peppa pig. Zephy signing pig whilst she speaks. They play together rather than alongside each other. He babbles to her and signs and whilst she doesn’t know what he’s saying they understand each other perfectly. He gives her a kiss, a sign of friendship, and it’s beautiful and perfect and everything the baby group should be.

Down syndrome

Be Kind

Perfection is not dependent on how many chromosomes you have

Beauty is not dependent on how many chromosomes you have

Health is not dependent on how many chromosomes you have

Happiness is not dependent on how many chromosomes you have.

All of these things coexist. Everyone and at the same time no one is perfect, all babies are beautiful, health is luck of the draw and is something to be thankful for and a privilege if you have it, it’s certainly not entirely linked to chromosome count. Happiness is for everyone.

Lots of us who have children with Down syndrome are more conscious of our language now, based on the journeys we’ve been on.

‘they suspected our baby had Down syndrome but he was perfect when he was born’

‘they thought our baby had Down syndrome from the scan but he was completely normal’

‘We don’t care if it’s a boy or girl as long as they are healthy’

‘Omg I can’t believe someone thought your baby had Down syndrome. He’s completely perfect and gorgeous looking. How terrible and rude’

‘Her baby is ugly, looks like a downs baby’

Whilst the world has come so far in terms of acceptance for differences, it still feels like there is a stigma surrounding Down syndrome, there is an offence if it is suggested that you child may have Down syndrome when they don’t. People still use Down syndrome as an insult towards people’s behaviour and looks. Imagine at your most vulnerable time as a parent looking at your child’s hospital notes and seeing the words ‘Facial features: Abnormal’.

Its allowed to hurt and we are allowed to challenge language in an attempt to make the world a little kinder and accepting for our children.

bekind #dontbesorry #downsyndromeawareness #positiveaboutdownsyndrome #bethechange #dontlimitme #wouldntchangeathing #wdsd2020

Down syndrome

It’s twins – finding out

Inspired by an Instagram month long challenge I thought I’d share a quick story about when I found out I was having twins!!

So around a year ago I found out I was pregnant. We were very excited but after our experience of pregnancy with Zephy we were obviously a little nervous. With Zephy and Elisha I hadn’t felt any sickness until around 9-10 weeks so was surprised when this time I was hit like a ton of bricks with sickness and exhaustion from around 5 weeks. Before I had Elisha we had a pregnancy that we lost at 12 weeks and in that pregnancy I had also get ill early on so I was worried there was a connection there. I was due to go back to work after my 1 year sabbatical and wanted to make sure everything was well before hand. At around 8 weeks I went to my local EPU for a reassurance scan which they offer to women who have had previous losses.

They almost couldn’t fit me in as had a sonography off sick but at the last minute said they would see me.

I lay on the bed and as she scanned me and said ‘I can see a great heartbeat and all looks well’. Weirdly a voice in my head said…oh well there goes the chance of being surprised with twins. It was such a strange thought because I’ve never desired for or thought about twins before!

Then she said…’well there is something’

My mind ran to worse case scenarios.

‘There’s another baby in there’

My first though was she was joking, then I thought surely she isn’t allowed to joke about this kind of thing! I think I nearly fell of the bed.

I said ‘ are you sure, maybe it’s the same baby from a different angle’.

Then she showed me the screen and sure enough….two little beans in the same sack, sharing a placenta.

I called Matt straight away when I got out and told him then I tried to call my mum and sister who were both asleep due to time differences and finally got hold of my niece to wake them up.

Telling people I was having twins has probably been one of my favourite moments of my life. It was always met with such surprise and joy/tears etc. It was an amazing experience!!

Down syndrome

3 years ago today…..

3 years ago today I sat waiting.

3 years ago today I felt sick to my stomach as an unknown number flashed up on my phone. I knew who it was and I took a breath knowing what ever they told me, life wouldn’t be the same again.

3 years ago today I sat on my daughters bed in an empty house and heard a midwife tell me ‘we have the results back and the baby has trisomy 21’. I replied ‘so my baby has down syndrome?’ ‘Yes’ she replied. ‘Okay’ I said.

She then asked me if I wanted to ‘interrupt the pregnancy’. ‘No’ I replied and that was that.

3 years ago today I called my husband at work to tell him. I then spoke to my sister who said ‘well that’s good isn’t it, he can survive and be fine with down syndrome’

I realised she was right. He would be fine. We didn’t know at this point if he would survive the hydrops but we prayed and hoped.

3 years ago today I knew nothing about Down syndrome or people with Down syndrome.

3 years ago today I felt I had lost something and I was sad and I grieved and I thought of lots of things I thought he’d never do.

3 years ago today I had no idea how life changing this would be. In a sometimes challenging way but also in an amazingly wonderful way. In a way that has opened doors, has made me a better person and led me to some of the most incredible people.

3 years ago today was probably one of the hardest days of my life.

3 years ago today was diagnosis day….

Down syndrome

20 week scan and hydrops

With the usual nerves before an anomaly scan, we went it. I had a confidence though, we’d done this before with Elisha and all had been perfect, I’d been feeling the baby move a lot for the past 4 weeks and I was feeling great. The 1:29 chance of a baby with Down syndrome was so far at the back of my mind I didn’t give it a second thought. (I realise now that a lot of people would have been more concerned than I was with that chance ratio!!) I truly believed my papp -a level was so low due to me still breastfeeding Elisha and being deficient in zinc so I’d been taking an additional supplement on top of my usual prenatals. I also had an element of ‘this couldn’t happen to me’. I already had a friend who has a son with Down syndrome (hi Tracey and Tyler 😉) so my reasoning was surely the chances of us both having children was impossible lol.

I lay on the bed and breathed the sigh of relief as you see you baby moving around on the screen and hear the heart beat. The scan was mostly uneventful to begin with, the sonographer remained upbeat throughout whilst taking measurements and talking about our baby. The first hint there was anything wrong was near the end of the scan she said, I’m just going to get my colleague to come and have a look at something. I started to feel nervous. It must be something bad right? They only get a colleague when they thing something is wrong. Someone senior came in and sat in silence whilst she scanned.

She finally spoke….there are some concerns with the baby, there is fluid around the babies heart, lungs and brain. It’s something called Fetal Hydrops. I later found out this is the name given to fluid in two of more locations in the body. They also told us the nuchal measurement was now out of a normal range and the femur length were shorter than normal. We were ushered into the ‘bad news room’ to discuss our options. They shared with us that what they had seen could be indicative of a chromosomal condition and that the severity of the hydrops was so much so that they didn’t expect the pregnancy to carry to term. We were offered a termination there and then. Our other options were to continue the pregnancy as normal or to have an amniocentesis to find out if there were any chromosomal condition. I’d always said I’d never have an amnio but when faced with what they were telling me I felt compelled to know what was going on, I wanted to know everything I could about this baby. Maybe by knowing we could look into treatment of the hydrops. I wanted to rule out certain conditions. So they booked us in for an amnio that afternoon. We had a few hours to wait so we went for a walk around the gardens at St Thomas and went for some lunch. It seems surreal now. Matt had to leave to pick up Elisha from nursery so I went in for the amnio alone. I remember saying to the sonographer as I waited ‘Am I going to get to take a baby home at the end of all this?’ and she said ‘No’ as gently as she could. The amnio didn’t take long but it was extremely uncomfortable. The needle seemed huge, I couldn’t look at what they were doing and there was a lovely nurse with me holding my hand. I was told to go home and take it easy. I was in no fit state to return to work so I took the rest of the week off whilst I recovered and waited for the test results.

We were obviously devastated with what we were told at the scan but we held onto faith that we would see a miracle. That Zephy would overcome the hydrops and survive the pregnancy. I was told that the fluid may eventually stop his heart or lungs from developing and I would stop feeling movements. His movements continued as normal and within a month of the 20 week scan the fluid started to reduce until it was back to a normal level. We were so very blessed, many others I’ve spoken to and come across have a different story. I think it depends on the cause of the fluid as to the outcomes. It’s often caused by catastrophic defects to parts of the body such as a heart defect, or caused by a virus. In Down syndrome it can be that, but it can also be the result of the lymphatic system taking longer to develop and it is believed this was the case with Zephy. Once that lymphatic system developed the fluid started to drain away.

Down syndrome

Breastfeeding Resources (inc Down Syndrome specific)

Here are some breastfeeding resources that I’ve found to be useful. If you know of any more please leave a comment and I will add to the list!

Uk Phone lines:

National Breastfeeding Helpline – 0300 100 0212 (calls answered by volunteers trained by the ABM and BFN)

La Leche League helpline – 0345 120 2918

NCT Breastfeeding Line – 0300 330 0771

Organisations:

The Breastfeeding Network https://www.breastfeedingnetwork.org.uk

Association of Breastfeeding Mothers http://www.abm.me.uk

La Leche League http://www.laleche.org.uk

Specific Down Syndrome Resources:

https://juliasway.org

http://oakwellbarns.co.uk/breastfeeding-your-baby-with-downs-syndrome/

https://kellymom.com/ages/newborn/nb-challenges/down-syndrome/

https://www.breastfeeding.asn.au/bf-info/down

https://www.ndsccenter.org/wp-content/uploads/CDSS_breastfeeding_brochure.pdf

https://www.breastfeeding.asn.au/bf-info/down

https://www.llli.org/breastfeeding-info/special-needs/

https://www.childrensmn.org/educationmaterials/childrensmn/article/15844/breastfeeding-an-infant-with-down-syndrome/

https://chromosomesandcurls.wordpress.com/2018/08/07/how-breastfeeding-can-help-your-baby-with-down-syndrome/

https://chromosomesandcurls.wordpress.com/2018/08/01/ten-tips-for-breastfeeding-a-baby-with-down-syndrome/

https://themilkmeg.com/breastfeeding-josee-ten-tips-for-breastfeeding-a-baby-with-down-syndrome/

https://iamriver.net/2017/07/19/breastfeeding-a-baby-with-down-syndrome/

https://www.mattoslactation.com/blog/2019/7/20/breastfeeding-and-down-syndrome-part-one-anatomy

https://www.raisingcaleb.co.uk/single-post/2019/05/29/Breast-feeding-a-baby-with-Down-Syndrome

Other useful websites

https://kellymom.com

https://www.cibii.co.uk

https://www.basisonline.org.uk