Tell me a little bit about your family life before Lucas arrived.
We were just a normal, mundane family; my husband works Mondays to Fridays full-time in construction and I would work Saturdays and Sundays part-time as a support worker. Both children in full-time school. So my weeks would be quiet at home on my own.
What was your pregnancy like? How did it compare to your other pregnancies?
My pregnancy was actually the best one compared to my other two children’s. I suffered liver Cholestasis with my other two pregnancies and we were told there was 80% chance it would happen again but it didn’t! Everything was very straightforward and easy.
What screening/chance did you have during pregnancy
We did the blood tests and scans to screen for Down syndrome which came back low-risk and that is what made the diagnosis harder to process. It wouldn’t have changed our minds during the pregnancy if it had come back high-chance but maybe it would have prepared us sooner. We wanted him no matter what and we still want him now. He is adorable. You can’t help but love him.
Have you been able to access all the support you need despite the pandemic?
Absolutely! The baby’s doctors are arranging regular check-ups with him and we have been put into contact with the local Down syndrome paediatric lady at the hospital too who helps the local Down syndrome Community. They plan on seeing him every few weeks no matter what and we have 24/7 support if we need it.
What support were you given whilst in hospital? Did the hospital give you the Down’s Syndrome Association helpline number for you to use should you need it?
The day we got the phone call confirming that Lucas had Down syndrome, they got us back to the hospital the very next day to sit and chat and we were given all the relevant information including DSA number and web page.
What was the first few days like at home with your new arrival, what happened next, how did you feel? what were your fears?
The first few days following Lucas’s diagnosis were extremely emotional; we spent a lot of time crying and reflecting. We were scared and if I’m honest I’m not sure that will ever go away. At least, that’s how it feels at times. I fear so much, how will he develop, how will we cope, will he be OK… We are aware we have hard times ahead of us but we will take them on head-first and just do the best we can.
How did you feel when you were told about Lucas suffering a stroke and then to find out about his heart condition and the diagnosis of Down syndrome?
We actually had people comment when Lucas was born that they were “sorry to see he had Down Syndrome” to which we had replied “he hasn’t”. It wasn’t until he had his baby-check before we left hospital at which point the doctor mentioned him having extra folds of skin with his eyes, that I did my own research and Down syndrome flagged up. Then, when he was rushed into hospital, an X-ray was done and found his heart was on the larger side, again another red flag. I mentioned my concerns to the doctors at this time and the point-blank response was “he does show prominent features” and then we went ahead with the genetic test. A few days later, it was confirmed. We were fully prepared for him being so poorly to be down to his heart, as he also has a low heart rhythm. So, to find out his heart wasn’t the problem but that he in fact had a stroke, was just unbelievable for us and super shocking; we were lost for words. And then the Down syndrome diagnosis broke our hearts; we have spent days after his birth crying and worrying and wondering but Lucas has been so so strong and he is thriving and we have to take strength from that and we are prepared to take on whatever comes our way.
Which diagnosis worried you the most and why?
Honestly, the stroke, just because we don’t know why it happened, that is still under investigation and we don’t know if there will be a re occurrence and we won’t know until he starts developing whether it has made a lasting impact on him. At least with the Down syndrome diagnosis, we know he is going to develop slower than an average child and he will have his own normal, so we kind of know what to expect.
Have you engaged with the Down syndrome community and if so how did it feel?
We have! And it’s been fantastic! Everyone is so kind and super supportive and it’s like having another family.
What does the future have in store for you all?
Oh my goodness! I have absolutely no idea but I plan on being a full-time carer for Lucas and to help him along on this journey with all the love and support from friends, family and the Down syndrome community. I’m feeling more and more confident that Lucas will have a bright future and he will be so loved. Whatever the future brings, we will make the most of every minute.
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