Your Story – My Baby Was Born With Complex Needs

Your Story

Meet Steph and her baby Lucas

Steph brought her beautiful baby boy Lucas along for a portrait session to celebrate his journey so far. Lucas was born with Special Needs and wasn’t well enough for a newborn session. Chatting to Steph during our photoshoot we decided it would be great to share Lucas’ journey with you all. Having a new baby completely changes your life and your family dynamics. Discovering that your baby has been born with a syndrome can multiply those changes, both the struggles and the achievements. Here is Steph’s story.

newborn baby special needs Lincolnshire Spilsby

Family Life

We are a family of 5, alongside Mum and dad, we have Tyler, 11, Lexie, 8, and Lucas, 16 months. Tyler is the typical boy loves his technology, gaming and been online with his friends. He is a kind hearted boy, popular in his class, well behaved and loves helping his little brother. Lexie is currently at the stage of being a little madam, she is caring and shares. She can act quite shy even though at home she really isn’t, she loves foxes! Her love for foxes came when we got a little dog called Max who looks very foxy. Then we have Lucas, he is most happiest 16 month old I’ve seen. He just gets on with life and doesn’t cry over anything we do with him. He’s very content with different faces and always makes us laugh with his random actions and noises. 

special needs family support Spilsby

Realising Our Baby Was Born With Special Needs

While in neonatal they did blood tests to check for Pierre Robinson syndrome as Lucas had signs of the syndrome. (small lower jaw, high arch pallet and difficulty in breathing). It wasn’t until we had taken Lucas home we received a letter stating Lucas has Cri Du Chat syndrome. I didn’t really feel anything when reading the letter as I’d never heard of it before. And it didn’t hit me the meaning of the ‘syndrome’ Lucas had. He was just my perfect little baby. But then it suddenly explained the troubles we had and our 9 day stay on neonatal. Then instantly we turned to google and it daunted on me it was a life long disability. It’s a chromosomal condition that results when a piece of chromosome 5 is missing. Leading from this letter telling us we had to then wait to see the consultant. 

Cri Du Chat Syndrome

Cri Di Chat can vary from each child, but the effects of the syndrome for Lucas is a high-pitched cat-like cry, (this was more noticeable in his first year), delayed development, distinctive facial features, small head size, widely-spaced eyes, low weight gain and weak muscle tone. To look at Lucas you wouldn’t think he was 16 months old. 

special care baby Grimsby
Before we knew what about Cri Du Chat or what Lucas’ special needs were

Hospital Stays 

We stayed in neonatal for 9 days, due to having problems with his feeding they inserted an NG tube. I wanted to try breast feeding as I didn’t do it with my first 2. Now I was older with Lucas I felt it was something I wanted to do, but after 6 hours of Lucas being born he still wouldn’t take any milk. We tried with a bottle and he still struggled with the suck and breathing at same time. Because of that we had Speech & Language visit us on the Ward. 

A New Experience

Having Lucas turned our world upside down. With my other children they were born and we were home the next day and got on with life. With Lucas we spent 9 days on neonatal before being allowed home. Then we were hit was lots of appointments, seeing new people, and a surge of home visits from different professionals. 

I managed to take him to a keepsakes group which was lovely but was also hard seeing other babies younger than him being able to sit up and do a lot more than Lucas who was just learning to roll then. I guess you can’t help yourself in your own mind compare his abilities against other children. 

As Lucas is delayed, his low muscle tone means he still can’t sit up unaided or crawl. So through occupational therapy Lucas has a special chair which supports him to be able to sit up and play with toys on his tray and watch the world from a whole new angle. Plus we have equipment to help him get stronger and a special bath. 

Baby With Special Needs Louth
Lucas’ support equipment

Clothing for Lucas can be a struggle because he is so long but very skinny, so jeans tend to be a no-go as they just fall down. We try and live in rompers & dungarees, depending on the brand some joggers fit nicely.

Home Help & Support for Specific needs

Before Covid appeared we had lots of appointments, either us seeing people in hospital or home visits which have all been very reduced or stopped completely. Appointments are now over the phone or we have the Health Visitor who comes to us every 2 weeks. They have to weigh Lucas due to him being very low weight, we have to keep an eye on this. Physiotherapists come every week to the home to see Lucas and show us different techniques to do to help.

Currently we are trying to get him weight bearing on his arms so he can crawl, and awaiting a standing frame to get some weight going through his legs. In the first lockdown we didn’t see them either so Lucas missed out on so much. Now onto 3rd Lockdown they are carrying on doing home visits. We also have portage who do weekly home visits. They bring different sensory toys and play with Lucas but also work to small targets.

Esco is another team who help organise everyone who work alongside Lucas every 3 months. We have a meeting so everyone is up to date on Lucas’ needs. Occupational therapy help us with equipment, and a Dietitian working closely with us due to Lucas having very low weight gain and has an NG tube currently been referred for a peg. Then his consultant appointments who overlooks everything about Lucas.

The Difficult Times

The hospital stays were pretty regular in his first year, they were hard being away from home and my other children. Having to explain each time we had to go in what his condition involved with it being rare, none of the doctors had heard of it. Then fighting to get back out of hospital as they were never happy with his milk intake and weight. That was hard, as I don’t like to confront people and my husband was at home with my other children. I had to fight on my own. Being Lucas’ mum and knowing him the best, it suddenly daunted on me the fight you have to give and what other families with children with additional needs go through to get the best for there child and getting them to listen! 

special care baby tummy time
Achieving tummy time!

The weight gain is always a massive achievement for Lucas, he burns so much energy constantly on the move, he is a little super star. The first development milestone where I really smiled was when Lucas was laid on his tummy and he was up on his arms and looked up like a proper little toddler. I saw him from a whole new angel seeing all his face popping up just for them couple of seconds before he flopped again was amazing. 

Support Groups for families with Special Needs

When we found out about his syndrome we instantly looked to see if there was a charity support group which we found via Facebook called Cri du Chat UK and Ireland – this group as been amazing! As it’s filled with families with children of their own or family members with Cri du chat of all different agers and with doctors & consultants not been able to tell us much about it, that group has been amazing whenever we have had a question or worried about Lucas. 

Enjoyment & Games

Lucas loves hair! And not just to pull, but he loves it across his face, so Lexie’s loves waffling her hair on his face as it makes him smile & giggle. They will both lay on the floor with Lucas and interact with him through his toys. Tyler will dangle toys in Lucas’ reach and make him reach up for them. 

Lucas has 2 favourite toys, he loves his vtech turtle toy which makes sounds and has dangly toys on it. He also loves his Chimeabout which has bells on. Currently we have noticed Lucas loves his shadow, when sat in his big chair he waves his arm around and watches his shadow on his tray, I think that’s pretty awesome! 

family portrait louth

Hope And Dreams

It’s hard to think along this road, as I have stopped letting myself think when he will do this, or when he will do that, as we will just never know, if he will be able to talk to us, or walk. I just hope I can give him the best possible life a mother can give, never let him down, and help him love life to the best he can with the help from his dad and siblings. 

newborn baby photography louth

Useful Links

https://criduchat.org.uk

https://www.facebook.com/CDCSGUK

https://www.bliss.org.uk – A fantastic website for babies born early or with special needs.

7 Comments

  1. Sarah Platt

    Wow, what a beautiful story and thank you for sharing this with me Steph. Lucas looks like a lovely little boy. I’m pregnant with my first baby and you have helped give me confidence that things will turn out ok regardless. x

    Reply
    • Steph

      Oh wow congratulations, must be hard for you during covid too – Thankyou for your kind words, a mothers instinct will get you through anything what passes your way 💕💕 xxx

      Reply
  2. Mike

    Reminds me of when we first had our son James, he has Edwards Syndrome. Such a shock and scary at first but we wouldn’t change him for the world.
    Best of luck to your family Steph, the efforts worth it all!

    Reply
    • Steph

      Thankyou for you kind words Mike xx

      Reply
  3. Judy

    I know this family very well. Steph and Liam are amazing parents and everything they do involves all the children. Lucas along with his brother and sister will have a wonderful life with parents who are totally selfless and devoted to their family. I wish them all the luck in the world xx

    Reply
    • Steph

      Thankyou so much Judy this means alot 💕

      Reply
  4. Hannah Goodley-Jones

    Amazing. What a brilliant family and story to tell.

    Reply

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