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….

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.

Mama, again..

As I sit nursing my almost 22 month old watching him drift off to sleep. I think about how important breastfeeding has been in our journey and not just for the obvious benefits we are so often reminded of. I’m thinking of the real time, actual, day to day ways it has influenced and shaped our journey as mother and son.

It started with that first feed, nerves, apprehension, and curiosity making way for relief, and hope that we would have a successful breastfeeding journey. During my pregnancy I’d read that he might struggle, that it might not happen. I’d heard stories of other mums being told not to even try. I was overjoyed and determined.

It then gave me a great sense of purpose after he was rushed to the neonatal unit and given an ng tube. I chose to sit and express milk by his cot side instead of the pumping room as I couldn’t stand the disconnect the room provided. I needed to be beside him. Being wired up in such a sterile and abnormal environment was so foreign to everything I knew about newborn life. I wanted endless skin to skin cuddles on the sofa and cluster feeding, and my own bed. I felt helpless except for being able to provide him with what I knew he needed. I focused on what I could do instead of what I couldn’t.

As a second time parent, it’s supposed to be easier. No longer a fear of the unknown. But this was a different journey. A baby with more to love, 47 chromosomes…down syndrome. Everything felt new and different somehow, we left the security of the hospital and arrived home. I needed my parenting comforts, the familiarity of my slings, my cloth nappies, and to breastfeed. We transitioned from NG tube to bottle to breast within 3 weeks. We needed it, I needed it. It’s wasn’t easy, it was awkward and clumsy. The low tone in his jaw meant I had to help him stay latched on, milk would go everywhere. It was one feed at a time for a long time.

When we got his diagnosis mid pregnancy, a million thoughts crossed my mind. Would I love him as much as my daughter?, would he seem imperfect to me?, would I bond with him?, would I look at him and see Down syndrome first and my baby second? It seems unbelievable now that I’d even think those things but I learnt it’s a normal part of the process.

Breastfeeding allowed that special time together, the oxytocin release, the love that flows, that he would become utter perfection in my eyes.

Life became a whirlwind of therapies, and appointments and groups. Carrying him close in various slings as his small floppy body has grown and strengthened over time. Keeping him close made me feel he was more protected, my inner mama bear on constant guard since the first moment we left the house with him.

Breastfeeding has brought an ease and a sense of normality to our journey. I didn’t have the worry of counting ounces and worrying about volumes of milk. My baby was growing well and having enough nappies for me to be confident and trust in what we were doing. When he was hospitalised with bronchiolitis he avoided feeding interventions because he was still breastfeeding.

It’s comforted him at various blood tests, medical appointment, therapy sessions and times of illness.

It’s allowed him an independence over his food intake which we continued when it came time to wean him into solid food by using the baby led weaning method. What better way to promote inclusion than around the dinner table.

It’s provided a form of regular speech therapy for him.

Its now allowing me to calm him when his frustrations at not being able to tell me what he wants and needs get too much.

It helps me get him back to sleep when he wakes multiple times in the night.

It eases and helps him when he gets close to constipation.

And for me, it’s a moment to reconnect. At the end of busy long days, when I’ve stopped being a physio, a speech therapist, a nutritionist, an occupational therapist and all the other roles you take on as a mother to a child with additional needs, it’s an excuse to just rest and be mama again.

Why I don’t think prenatal testing has to be a bad thing……

I’m often asked by friends that are pregnant what my opinion is on the prenatal testing, whether that be the nuchal screening or the non invasive prenatal testing (NIPT) which is also a screening.

With my eldest child I don’t recall being asked if we wanted to go ahead with the nuchal screening. I was probably too nervous about having the scan to really think much about the screening side of it. I was more concerned with seeing my baby on the screen and making sure she was measuring the right size for the dates etc.

When I was pregnant with Zephy I remember them specifically asking me if we wanted to go ahead with it and I had to sign a piece of paper. I remember sitting there about to have my blood drawn with the pen in my hand and hesitating thinking ‘do I really need to known this information?’. My immediate next thought was well chances are there will be no issues so I might as well just go ahead with it so I signed it. It’s more the fact I was already in the chair and the nurse had already starting setting up that I signed it. I’d have felt awkward saying no and getting up.

As it happened, the screening came back as a 1:29 chance for Down Syndrome. We were taken in the bad news room and given a few options, a) terminate the pregnancy immediately, b) more tests either a CVS or to pay for the NIPT, and c) carry on as normal. Carry on as normal seemed the best option and genuinely at that point I put any thoughts of the baby having Down Syndrome to the back of my mind. Not that I was in denial but I genuinely didn’t think those odds were that important. What the testing did bring to attention was that I was severely low in a hormone called Papp A which is a pregnancy growth hormone. I now know that was likely so low due to the placenta also having a trisomy and therefore not functioning as well as it should. At the time we didn’t know the cause, only that it was severely low. They say you are low once you are down to 0.3, mine was 0.08 to give some perspective. I was instantly put on a low dose aspirin which thins the blood allowing more through to the baby to encourage growth and keep the baby healthy.

We then at 20 weeks found more complications with the baby which led to them telling us he wouldn’t survive. At that point I needed to know everything about him so agreed to having an amniocentesis which was how we found out Zephy had Down Syndrome. Thankfully he made a full recovery from the complications spotted with the next four weeks. The rest of the pregnancy was filled with appointments, growth scans and in depth heart scans and we were informed at every appointment of our increased risk of a still birth.

So what are my thoughts on the testing? I get a general feeling that there is an opinion that people only have the testing on the basis that they want to know so that they can terminate the pregnancy in the event the baby has Down syndrome (or other diagnosis) and whilst that is the most common reason. There are those of us out there that have it for different reasons. Something I’ve only learned in hindsight so is probably something that other who haven’t experienced it wouldn’t always think of.

I often sense a certain smugness shall I say when I read Internet forums and comment on article about testing and people proudly state ‘we declined the test as it didn’t matter to us’.

I often feel when I tell people I had a prenatal diagnosis, especially an amniocentesis due to the miscarriage risk, that I have to follow it up with explaining that we would never have considered not keeping the pregnancy and that we just wanted to know for medical reason and to get him the best care possible. I sometimes feel judged for the choice we made and feel I have to defend our choice.

I’m a details person, I like to know things and research. Based on what I know about my pregnancy with Zephy, I feel that by not knowing his diagnosis he would have been at greater risk. By 36 weeks the blood flow to the placenta was dangerously low. They wanted him to hang on until 37 weeks to deliver as long as I came in every other day for monitoring. I honestly dread to think of the possibilities had we have not known about all this.

When we got the phone call to confirm Zephy’s diagnosis, the questions we asked ourselves was how best can we prepare going forward. It was never a decision as to whether to continue the pregnancy.

So this is why I’m not against prenatal testing. I like the idea of an alternative to an amniocentesis. That whilst still a screening rather than a diagnostic test, it’s highly accurate (although false negatives and positives can occur).

My issues around the testing lies in the wider believes as we’ve seen in recent news pieces.

Medical professionals with a believe that the tests are only available for the purpose of terminations.

The automatic assumption of termination in almost every prenatal case I’ve come across

The worst case scenario presented to parents as to what life will be like

The lack of support for those who want to continue in their pregnancy.

There are organisations working really hard to change the negativity around a diagnosis of Down syndrome such as ‘Positive about Down Syndrome’ and ‘Wouldn’t Change a Thing’ alongside the local Down syndrome organisations.

Until the message out there is changed then I don’t believe the NIPT tests is something to celebrate but I also think it’s a great option for people who want to know in order to keep their baby as safe as possible!

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Zephy the (almost) Zero Waste Baby

So I couldn’t let Zero Waste Week pass by without a quick post.

I became interested in reducing my waste when I was pregnant with Elisha back in 2014. The thought of the amount of nappies going to landfill horrified me especially when I read they can take 500 years for one nappy to decompose. Over the past 4 years I’ve tried my best to do what I can to reduce waste. So here are my zero waste parenting tips!

Photo credit to David Handley

1. Breastfeeding. One of the lesser talked about benefits of breastfeeding is the environmental benefit. No packaging, no bottles, no pollution or use of natural resources etc. I’d have loved to have exclusively breastfed from day on but due to Zephy requiring to be tube/bottle fed the first 3 weeks we used a couple of bottles and tubes/syringes. It broke my heart in hospital having to use new tubing and bottles/flanges every time I expressed and then having to throw it away. 😔 We’ve made up for it since hopefully as we are 20 months and counting with breastfeeding.

2. Nappies. I decided when I was pregnant with Elisha to invest in some reusable nappies. I bought a kit from a friend who bought and then never used. I topped that kit up with a few more pretty designed ones and have been getting on great with them ever since. With Elisha I was super hardcore, did multiple trips and holidays and exclusively used cloth throughout. With Zephy, I’ve used the odd disposable when we’ve been on holiday but at home we are full time in cloth. One of the wonderful things is that I haven’t had to buy any new ones since he’s been born. I’m using the same one his sister wore and they are all still in great condition.

3. Wipes. Would you believe me if I told you I have never bought a pack of disposable baby wipes in 4 years of parenting. I invested in a kit from a company called Cheeky Wipes of cloth terry towel wipes and have been using them ever since. They wash amazingly and work l better in my opinion than the odd disposable wipe I’ve used.

4. Clothing. I get lots of my children’s clothes from charity shops or preloaded online etc. The clothes I do buy new I try to shop ethically where I can. I always pass on clothes to other people once we are finished or keep for any more future children. Clothes that are too worn or at the end of their life cycle I sent to fabric recycling points.

5. Toys. Again, I get a lot of toys from charity shops (love a bargain!) and I also love wooden toys. At first glance they often seem expensive but actually in comparison to some of the plastic branded toys Elisha has expressed interest in I think the value is really there in terms of open ended play which is something we like in our house as well.

6. Baby food. I’ve done baby led weaning with both Elisha and Zephy and so we have avoided where we can buying jars and the pouch style baby foods in favour of food prepared at home. Even if doing traditional weaning you can batch cook lots of baby food and put in small jars to take out with you. The pouches can be recycled via terra cycle so for those that love their Ella style convenience then they don’t have to go to landfill!

7. Shopping. I try to shop online at companies I know are ethical and keep their waste to a minimum. My favourite shop for this is Babi Pur. An online ethical children’s store which now also sells a lot of household and toiletry items etc as well. They also have amazing customer service.

8. Other things around the house. This is a work in progress for us. I’ve done things like made the switch to bar soap, shampoo bars, menstrual cup/cloth pads, cloth wipes in the kitchen etc. Just little steps here and there that I can commit to. A new zero waste shop has opened locally where you can take containers and buy loose food items such as pasta and rice etc so that is my next plan to try!

So there we have it, a few ideas of how to reduce waste as a parent. I’ve definitely still got a very long way to go in reducing our household waste but I’m quite pleased with what we’ve been doing so far!

I’d love to hear of any other tips anyone has!

Ten Tips for Breastfeeding a Baby With Down Syndrome

So you have decided you would like to breastfeed your baby. There are so many benefits in breastfeeding and these can apply even more so to babies with Down Syndrome. Breast milk can boost your babies immune system and provide protection against numerous auto-immune disorders such as celiac disease, allergies and asthma to name a few. The act of breastfeeding itself will strengthen your babies tongue, lips and face which helps with future speech development.

Sadly there is a myth that babies with Down Syndrome cannot breastfeed and I’ve heard many stories of mums not being supported or being told their baby won’t breastfeed so not to bother trying by various healthcare professionals.

Whilst it’s absolutely possible for many babies with Down Syndrome to breastfeed efficiently and successfully, there are some factors that may arise which can impact on establishing feeding. Medical complexities, low muscle tone and lack of suck, swallow, breathe co-ordination are some of the additional challenges facing babies with Down Syndrome. As a result some mums will breastfeed with expressed breastmilk from a bottle/tube and others will move onto formula milk.

I have been a breastfeeding helper with the BFN (the breastfeeding network) for nearly 2.5 years and Zephaniah, my baby with down syndrome, is my second breastfed baby. I had a pre natal diagnosis and one of my major fears and concerns was whether I would be able to breastfeed. Thankfully I was surrounded by wonderfully supportive people who reassured me that it would be hopefully be possible! We had a slightly rocky start and I had to express almost exclusively for the first 3 weeks whilst bottle feeding and using an ng tube whilst we were in the special care unit and in the first week or so at home. Zephaniah is now 19 months old and continues to be breastfed.

Here are my top tips! I would love for any other breastfeeding mums (or dads) to share any of their top tips in the comments.

1. Find your support during pregnancy

This is so important when pregnant with any baby. It’s something I learnt in hindsight after I had my first baby. The immediate post partum period can leave a woman feeling vulnerable, emotional, hormonal, physically in pain and sometimes the thought of trying to seek out where you can get support from can feel overwhelming. During pregnancy pop along to your local breastfeeding support group or La Leche League meeting and have a chat. Ask what support is available in hospital in the immediate post natal period. Have the breastfeeding helpline numbers to hand.

2. Colostrum Harvesting

Speak to your midwife about harvesting some colostrum in the last few weeks of pregnancy. This is expressing and collecting colostrum. They can show you a correct technique and provide you with syringes to collect the drops in. This will be beneficial in the early hours/days if your baby struggles to latch straight away or needs expressed milk/supplementation.

3. Donor Milk Policies

Talk to your hospital about their policies and availability of donor milk/milk bank if this is something you would prefer your baby to have over formula should you be required to supplement your baby with milk. Hospitals have different guideline that they follow so if you have something in place with them it will make things easier when the time comes.

4. Be prepared to pump

There are many reasons you may need to express breastmilk for your baby. It could be that your baby is struggling to latch or it could be due to a nicu/scbu stay, or baby being too sleepy to feed. If you baby has a heart condition or other medical issues going on then they might tire easily. Whilst you are in hospital you should be able to access a good hospital grade double pump. There are some companies that hire out hospital grade pumps at home or you can use a high street brand electric or manual pump. Some babies with Down Syndrome will breastfeed with no problems from the beginning, others, like any baby, may take longer to establish effective, successful feeding. Some mums will decide to pump exclusively for their babies for whatever timeframe they choose to. I pumped for around 3 weeks with Zephaniah before he was effectively feeding at the breast. I know a mum who pumped for 5 months before getting her son to feed directly at the breast.

5. Be wary of the phrase ‘It’s a Down Syndrome issue’

Don’t assume or allow anyone to dismiss problems you are facing as being ‘a Down Syndrome issue’. As a breastfeeding helper I have seen many women with typical babies facing all sorts of difficulties when establishing breastfeeding. Position and attachment, tongue tie, sleepy babies, being pushed into formula top ups, and mis information and awareness of typical newborn behaviour patterns are common reasons for struggling and all of these same things can apply to you and your baby with Down Syndrome as well as some additional challenges your babies may face. The main additional challenges your baby may face is difficulty latching and feeding due to low muscle tone, taking longer to establish a breathe, suck, swallow routine, being more sleepy or tiring easily. If your baby has complex medical issues such as a heart defect or anything else requiring surgery then there may be pressure for your baby to gain a certain amount of weight in a specific timeframe and sometimes this can make establishing breastfeeding a challenge.

6. Comfort and support

Low muscle tone in a baby can often make the baby feel heavier or floppy and more of a challenge to hold whilst breastfeeding. It’s important for your comfort, and your baby’s, that you are both well supported with good position and attachment. A suitable chair, a supportive breastfeeding pillow or your own cushions can help with this. Babies with low muscle tone will often brace their feet against something such as the arm of the chair to stabilise themselves and this can lead to arching which can impact on the positioning of the feeding. You may also want to give additional support to the babies head whilst making sure you aren’t restricting their movement.

7. Dancer Hand Position.

This is a technique that can assist when a baby has low muscle tone. You start by holding the breast in the C-hold (thumb on top and 4 fingers underneath) but support the breast with only 3 fingers leaving your index finger and thumb free to hold the baby’s cheek on either side, forming a U shape with the baby’s chin in the bottom of the U. This keeps the weight of the breast off the baby’s chin and helps keep the head steady. This can really help your baby to maintain a good latch. In the early days of feeding Zephaniah he really struggled to maintain a latch and without adequate chin support he would slip off the latch frequently. I would always have to feed him with a muslin cloth underneath as he leaked so much milk out of his mouth. As he got bigger and stronger so did his latch.

8. Skin to skin.

Make lots of time for skin to skin contact with your baby. This will help establish your milk supply and raise oxytocin levels. Whether you have a prenatal or post natal diagnosis, the immediate time after birth can often be traumatic and confusing. Your baby may be in the nicu or scbu where it can sometimes be more of a challenge to easily have skin to skin with your baby so it will need to be intentional. You may be feeling a variety of emotions and some mums may struggle to initially bond with their baby after having a surprise diagnosis. It’s normal to go through a range of emotions from sadness,to grief, to guilt, to anger and everything else in between. It’s also normal to not feel any negative emotions and have no issues with bonding, everyone is different and all feelings are normal.

9. Weight chart and red book.

In the UK all babies are issued with a red book at the hospital which contains medical information and growth charts/developmental information. Make sure you are given the green Down Syndrome insert which contains specific weight/growth charts as babies with Down syndrome can grow at a different/slower rate to typical children. Your baby may seem to be on a lower centile on the typical graph which can lead to some health care professionals recommending top ups of either expressed breast milk or formula when it’s unnecessary.

10. Go easy on yourself and enjoy your baby

Having a baby is a major event in anyone’s life and having a baby with additional needs adds an entirely different dimension on to that. Do what is best for you and your baby. Make informed choices. If you want to breastfeed and are struggling, try and find the right support and be patient as it can take time to establish.

If you are a mum who desperately wanted to breastfeed and have been unable to, know that you did your absolute best for your baby and you are amazing for giving it a go!

Resources for breastfeeding babies with Down syndrome.

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

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

https://juliasway.org

What a load of Papp (A)

My pregnancy with Zephy featured a whole host of medical anomalies both with him and also with me. I thought I’d do a series of posts talking about some of them in more detail. This first one is about Papp-A or specifically having low Papp-A.

Two years ago this month we went for a routine 12 week scan. The first 12 weeks of any pregnancy are nerve wracking especially when like us you have had a first trimester loss (we previously lost a baby at 11+5 in 2013). I’d already been for a ‘reassurance’ scan at 8 weeks so I was feeling hopeful and excited to see our baby on the screen.

I don’t remember in my pregnancy with Elisha being asked to consent to the nuchal screening blood tests etc, as far as I believed it was just standard procedure although I know some people choose to opt out of them. This time I remember sitting in the blood test room and them handing me a form to sign and thinking ‘do I want or need this screening’. My pen paused before I signed it and I considered leaving and just having the dating scan but I figured since I’m already here and sitting in the chair I might as well go ahead with it.

We had the scan and all went well. We were at a hospital that give you the nuchal screening results there and then, so you go into the waiting room and wait for them to generate your results and you get called back in to chat with them.. When they called us back we were so surprised to hear the result was a 1:29 chance of Down syndrome. Note I use the word ‘chance’ and not ‘risk’ which is what they said to us at the time.

We were talked through our options….termination, non invasive test costing £400, CVS or carry on as normal. We contemplated the non invasive test for a brief moment but the cost was a lot for something I genuinely thought was going to come back negative. Carry on as normal seemed to be the best option for us so that’s what we did. They referred me to a consultant and told me to take a low dose aspirin which apparently helps more blood get through to the baby which would hopefully help any growth issues arising.

When I got home I picked through my pregnancy notes to find all my results to figure out where this 1:29 had come from. My age played a factor. The babies nuchal measurement was in normal range, my hcg levels were also within a normal range. My Papp-A level was extremely low. Lower even than the average result seen in a Trisomy 21 pregnancy. They class you as low if you are 0.3 or below and mine was 0.09. I read lots of scary stories online where babies had stopped growing and people having second trimester miscarriages. As my results didn’t seem to fit with a typical trisomy 21 pregnancy I convinced myself it couldn’t be that. In hindsight perhaps it was just something we weren’t ready to face at that time so it was easier to carry on as normal. I had a friend at the time who already had a child with Down Syndrome so I thought it would be to much of a coincidence for my baby to also have it and also because of a ‘things like this don’t happen to us’ mentality.

We would never have considered not continuing the pregnancy so we didn’t have that hanging over us pushing us to know for definite either way.

Papp-A is a relatively new thing they test and because before that day I’d never heard of it and everything I googled about people with a result as low as mine were sad stories of loss so it was terrifying. Hopefully this will give someone searching a bit of hope that such a lot result doesn’t always result in the worst case scenario.

What is Papp A?

It’s pregnancy associated plasma protein A. It’s a hormone that is produced by the placenta in pregnancy. It is a zinc binding protein.

Low Papp-A

Low Papp-A can be associated with Down Syndrome. Studies have also shown that low Papp-A may also be associated with low birth weight babies and early deliveries. The national guidelines suggest extra scans to keep an eye on growth. They will likely recommend this is the level is below 0.4 MoM.

Why I left Holland…..

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As a child I was very privileged in that I got to do a lot of traveling. We had family in Malaysia so spent time exploring that part of the world. We also did the usual Florida Disney holiday and places in Europe etc. We rarely, if ever, booked package holidays. We’d just book flights and often sort out a hotel once we arrived. We’d rent cars or hire a driver for the duration and we’d pretty much just explore. We’d do the usual tourist haunts but also go further afield and try and see the ‘real’ country or city. It’s what holidays are about for me. Even on my last ‘family holiday’ with my dad, aunty and uncle, we broke out of the confines of our Cuban all inclusive resort and drove 4 hours away to Camaguay where we visited restaurants that required you to order your food two days in advance and I played pool with Cuban teenagers using broom handles.

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When we got Zephy’s diagnosis I reached out online. Google searches and Facebook groups and websites. Anything to discover more about Down Syndrome itself, to catch a glimpse of what life might actually be like, I wanted to see real life, not textbook diagrams pointing out physical features my son may or may not have. I wanted to know all the things my son could do in life, not a list of things he might not be able to do, or struggle with.

It was during this time that I came across ‘Welcome to Holland’. For those who have never heard of or read it, there is an image above. I initially loved it, it spoke to me, it justified my feelings, it reassured me. It was truly how I felt at that time. I now read it back and cringe a little. I related to it very much initially, even during pregnancy everything was different to the joyous journey we had planned and expected when we first saw those two pink lines. We weren’t in a place of cute bump photos, and gender reveals and elaborate baby showers. We were thrust into a world of amniocentesis, dreaded phone calls, heart scans, fetal hydrops and praying our baby would defy the doctors prediction of a 0% chance of survival. I certainly was in Holland alright! Or so I thought at the time.

Then Zephy was born. I sometimes feel like he wasn’t truly born until that day we brought him home from the hospital, like the two weeks we spent in the neonatal unit were like some weird part of pregnancy. That also felt like Holland. Despite everything, I’d convinced myself we’d only be in hospital a couple of nights so being there for what felt like an eternity (it really wasn’t long) was like torture. Tube feeding, monitors and scheduled feeding times, nothing was how I’d imagined or expected the first few weeks with my baby to be.

Then we can home, and life with Zephy truly started and let me tell you, I realised pretty quickly that…guess what…Holland was okay…but I’m heading back to Italy!

We might be taking a more scenic route somedays, visiting Oropa instead of Venice and venturing into unknown terrain but it’s still Italy and I wouldn’t want to travel any other way.

So whether you are in Italy or Holland or like me have visited both, just enjoy your trip!!

Can we talk?

Can we talk for a moment about the fact that in the UK today you can terminate a baby with a disability or ‘abnormality’ up until they are full term. Just let that actually sink in for a second… 

I had no idea these ‘Ground E’ abortions existed. Even during my pregnancy with Zephaniah I wasn’t made aware because we informed them after we got the amnio results that we wouldn’t be ‘interrupting the pregnancy’ as they put it. Thankfully our decision was respected and the issue wasn’t raised again. Sadly it seems from chatting with other women that it’s quite common for families to be repeatedly asked if they want to plan a termination for the remaining duration of their pregnancies. 

A full grown baby that could survive with little or no intervention once outside of the womb can be killed in utero. So because a baby doesn’t fit what we perceive as the norm or what we want when we imagine our future children we can just end their life and be rid of them to try again in the hope that the next time we will produce our image of perfection. 

An article I read about this said that some terminations were carried out for a baby having a club foot or a cleft palate. Both of those things can be rectified. It also reported on cases where mistakes had been made and babies found to have no conditions once they had gone ahead with the termination. 

I understand that facing the prospect of raising a child with potential medical issues is daunting but plenty of babies with Down syndrome are born very healthy. Zephaniah being one of them. In fact, from my own anecdotal observation of babies born that I’ve seen in Down syndrome birth groups online etc the majority of these babies are born with minimal medical issues. 

Let’s just imagine for a second if prenatal testing could diagnose

autism…..

diabetes…..

epilepsy…..

childhood (or adult) cancers…..

deafness…

blindness…..

mental health illness….

drug and alcohol addiction….

any other health or medical issues that result in the use of NHS facilities……

Let’s go even further, what if we could have some kind of test that would show 

lower than average IQ……

those who were going to join gangs and become drug dealers…..

those who would live in poverty…..

those who would become murderers, and rapists. 

What would our populations look like?

Would we keep keep these babies?

In 2011 a survey of people with Down syndrome concluded that 99% of those questioned were happy with their lives. That’s a lot of happy people!! 

Are we just scared of bringing someone into the world who may do things differently to us, someone whose ‘normal’ may not be our ‘normal’. Someone who may learn at a different rate to use, or have different goals and achievements than us. Is there still a stigma over bringing a child with additional needs into the world? Probably….. 
People will likely stare and make ignorant comments. Some will be awful and cruel. I hope and pray that I can avoid those kind of people and protect Zephy from them. 

Maybe they need to develop a prenatal test for that….

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 😉