Practical Things for the ‘Differently Able’ Parent

I have a condition called Holt-Oram Syndrome. It affected the growth of my arms before I was born. I have no thumbs, short arms, a lack of dexterity and no biceps / triceps. This occasionally makes things harder to manage although I tend to find my own ways of doing things. The idea of becoming a mum was something I found a little daunting. I find that it usually takes me a while to find a way to manage something new so dealing with so many new things at once seemed like a challenge. I decided I wanted to make things as easy as possible on myself and started to research more manageable options.Babygrows and their fiddly poppers were a concern. I’ve seen people with ‘normal’ hands struggle so knew I needed to find an alternative. It took a while but eventually I found these Velcro babygrows from Hook and Loopy.

 
They can be found on www.notonthehighstreet.com too and you can get cashback if you visit the Topcashback website first. You can also find them on eBay.

Another option that I found during my search is the magnetic babygrow from magnificent baby. It looks amazing, I’d love to get my hands on one but they seem to be a little hard to find in the UK. I have contacted the company and they are hoping to set up distribution to the UK soon so fingers crossed they will soon be available.

  
The easiest non-popper babygrow to find seems to be the zip up babygrow. They are available from a range of different shops, including Boden, Gap and Hatley.  They are a little more expensive than traditional babygrows but I decided that they’re worth it if they make life a little easier.  

  
The pram was something that really worried me. There were so many different elements that might make it hard to manage. The height of the handle, the brake, the folding mechanism, the weight, the ease of steering etc. Eventually, after trying a lot of prams, I found the Bugaboo Cameleon 3.  It ticks all the boxes and looks pretty good too!  I also have to say that the customer service has been amazing.  

The car seat was even harder to find. They’re heavy, they’re awkward and they have childproof buckles which makes them hard for those lacking opposable thumbs! After months of searching and many tears we found the Cybex Aton Q.

  
Cots were another problem. We wanted to have our baby in the room with us to start with and we discovered the babybay which adds on to the side of a normal bed so that you can co-sleep without the danger. It has a removable side which makes access really easy.

  
Bathing the baby was also something which I was worried about managing, until I found the changing unit from Cosatto.  It has a bath under the changing unit. The whole thing is on wheels and there’s a draining tube so you can take it to the bathroom and empty the water out without having to lift a heavy bath full of water.

  
I also thought that this bath support from Mothercare would be useful to help deal with a slippery wriggly baby.

  

20 weeks

We began seeing our midwife regularly and were so excited every time she listened to Lentil’s heartbeat, it was the best sound I’d ever heard, it filled me with joy every time and was so reassuring to know he was ok. At about 17 weeks I started to feel the first flutters of movement and soon after that Paul felt a kick too. It was so special. We loved feeling him moving around. We went for our twenty week scan, again I was worried, I was sure we’d find that Lentil’s arms had stopped growing or that his heart hadn’t formed properly but once again we were reassured. Everything was fine, he was growing exactly as he should. Our beautiful boy was perfect although a little camera shy this time as he wouldn’t pose for a clear photo! 

  
 We decided that we didn’t want to find out whether Lentil was a girl or a boy at this point although a few weeks later he gave us a very definite sign! Paul put his hand on my tummy and said ‘kick if you’re a boy’, we very quickly had a very big kick! We tried again with ‘kick if you’re a girl’ and felt no movement at all. We already had a feeling that he’d be a boy as all our friends seemed to be having girls and my husbands family is full of boys.  

12 weeks

We were so excited when we reached 12 weeks. We went for our second scan and again we were so relieved to find that Lentil was doing well. We could see his little heart beating. We couldn’t believe the difference in how he looked. He suddenly looked like a real little baby. He showed us his arms, one and then the other, he showed us his thumbs. Even the sonographer couldn’t believe how clear the pictures were. She apologised for being quiet and said she was just really enjoying looking at him, he looked exactly like the pictures in the textbooks and he was beautiful.

We still didn’t tell many people at this point. I was constantly scared that something would go wrong so we decided to wait until our 20 week scan to mention it on Facebook although we had to tell people we saw regularly before that as I was getting fat!

Lentil: An Introduction 

In October I came down with tonsillitis. I was advised by my GP surgery to attend the minor illnesses clinic at my local hospital. I did this and was prescribed antibiotics. I hate taking medication and always drive myself mad reading all of the side effects listed on the little leaflet inside. I read that the antibiotics shouldn’t be taken by pregnant women, my period was due the next day so I decided to wait, just in case. The next day my period didn’t come and my tonsillitis was still really bad so I rang the GP to check what I should do. I was told to wait until the next day, do a pregnancy test in the morning, if it was negative I could take the antibiotics.The next day my husband left for work as usual. I got out of bed and took the pregnancy test. It was a digital test and almost immediately it told me I was pregnant and had been for 2-3 weeks. To say I was gobsmacked would have been an understatement. My husband and I had got married the previous February and we wanted to have children but we weren’t actively trying. I have a genetic condition, there’s a 50% chance of passing it on. It causes problems with the growth of arms, collarbone and heart. We were still deciding whether to have children naturally or adopt. A big part of me felt that if I happened to get pregnant naturally while we were deciding that would make life easier as the decision would be taken from us. I worried about the guilt I would feel if we actively tried for a baby and the baby was then ill because of my condition but none of that mattered anymore as the decision was made. I was pregnant and I needed to tell my husband!

I rang him, he was on his way to work, luckily he has handsfree in his car so he was able to answer my call, I decided to start with “don’t crash the car but…”. He was so excited, shocked, but excited. I could hear the happiness in his voice. It was just the best feeling ever but along with the feeling of joy there was a huge feeling of worry and responsibility. I now needed to keep this tiny little person safe. We told close family about the pregnancy and I told a couple of work colleagues. We felt it was too early to tell lots of people but I wanted a couple of people at school to know in case anything went wrong. At six weeks a pregnancy app told me that our baby was the size of a lentil, I told my husband this and from that moment on our baby was known as Lentil.

At nine weeks I had a small amount of bleeding, I called my GP who arranged for me to have a scan. We went to the scan, I was so terrified that we would be told that we’d lost Lentil. To our great relief we were told that everything was fine. We saw his heartbeat , he looked like a fish on the scan. Arm buds were just beginning to grow and I spent most of my spare time talking to Lentil telling him to make sure he grew long arms, to remember to grow thumbs and to grow a strong, healthy heart.