Charlotte Hanley is a mum to three gorgeous boys. Here she shares her birth story with her youngest son, Daithí, and the moment she discovered her beautiful little boy was born with Down syndrome.
Charlotte describes how Down Syndrome Limerick (DSL) stepped in at one of the most vulnerable stages of her life to offer unwavering support, services and kindness. She applauds their innovative leadership and the way they unite a community through their work. Here is Charlotte and Daithí’s story.
“He was Daithí, My Son, My Child”; One Mother’s Story with a Down Syndrome Diagnosis
It was Good Friday and my last day of work before starting maternity leave. With three weeks to go, I was throwing a big Easter dinner for my family. After the holiday, I would have time to relax before the baby arrived – as much as possible with two older children, that is!
But it was not to be – Daithí Jack Hanley had other ideas! Easter Sunday morning, while preparing the lamb for the crowd descending on us, I started having contractions.
When I got to the hospital later that evening, the midwives prepared the water bath, dimmed the lights and we were on for the most Zen birth ever – and it was. I held him as he made an appearance into the world, and when I saw him my heart nearly stopped.
I did not recognise the baby before me. The baby I had given birth to had Down syndrome. I could see his little almond-shaped, upturned eyes. That couldn’t be right! I could hardly talk – how could this have happened? Where was my healthy child, the one like my other two boys?
I Was The Best Person to Take Care of Him
What followed was around 36 hours of tears, sadness and endless questions. No newborn snuggles – just a pain in my chest. The baby wasn’t feeding well and had to go to NICU. We went to see him shortly after he was taken there and met a doctor who told us he needed antibiotics.
He was hooked up to lines and oxygen, and he would be in NICU for five days. I broke down in tears. I tried to go into the little room where he was. I told the doctor he was fine, that I would take him back to the ward with me, that my baby was fine and I was the best person to take care of him.
“My baby” – those words stirred a feeling that hadn’t been there until that moment. He was not “that baby”, or “the baby”. He was Daithí, my son, my child, and I realised that all that mattered was that I loved my beautiful boy – regardless of how many chromosomes he had.
Battling to Breastfeed
What followed were days of battling to breastfeed. It was the only thing I felt I could do for him. The lactation consultant was amazing, going above and beyond for me, putting me in touch with other mothers who had successfully fed their children with Down syndrome and who’d had to battle hypotonia (low muscle tone), pumping and positioning to make latching less exhausting for their babies.
Back on the ward, one of the nurses would sit with me and talk to me for far longer than she needed to. I started to feel a kind of support from others that I had never felt before – people I did not know, reaching out to help me wade through these unknown waters.
As we were preparing to take Daithí home, it was discovered that he had duodenal atresia, a blockage in his stomach. All that hard-fought-for liquid gold was just sitting in his stomach, not getting into his system. We waited for an ambulance to transfer him to Crumlin. At only a week old, he had an operation and spent three days in intensive care.
Down Syndrome Limerick Made Contact
The days after the operation were the most difficult of my life. We still had so many emotions running through our heads. Louise, the Parent Link Liaison person from Down Syndrome Limerick (DSL), made contact with me.
Louise contacts all parents in the Limerick region who have had a baby with Down syndrome, and is trained to listen and support them. Her daughter Ameliya had the same operation as Daithí shortly after birth, and Louise was so positive about everything.
She was in touch every couple of days – kind, empathetic, answering my questions and addressing my concerns. Louise came to visit us when Daithí came home from the hospital, at one month old. She scooped him up and barely let him out of her arms the whole time she was with us.
We Felt Welcomed and Part of The Community
She was besotted with him too. It was reassuring to talk to someone who understood my feelings, who had been in the same situation and was out the other side. She was radiating happiness from her own life. She was living a life touched by Down syndrome and was perfectly happy – perfectly, dare I say it, normal.
I learned about the services on offer through Down Syndrome Limerick: Speech and Language Therapy, Occupational Therapy, parent and baby sessions, counselling and more. We received an invite to a family fun day organised by the charity, where we could meet other families. We went along, and from that moment we no longer felt alone on this journey – we felt welcomed and part of a community.
All these families had had their lives changed; they found themselves travelling a different road. These families were truly accepting of life on this road, and more than willing to take our hand for those first few steps along it.
Down Syndrome Limerick is So Deserving
Down Syndrome Limerick is parent-led, and it’s blazing trails across Limerick if you ask me – shouting from the rooftops about how wonderful our children are. They are there to help and support families from the minute they find out about a diagnosis, right through school age and into adulthood. It is a small charity that receives no state funding.
DSL has innovative leaders willing to sacrifice their time for the betterment of the whole community, so that people with Down syndrome have the support they need to achieve their full potential and live as independently as possible. Charlotte’s family, and so many others, have felt the difference DSL makes every day.
Support Down Syndrome Limerick
To help families just like the Hanleys, you can support Down Syndrome Limerick through donations or by taking part in one of their fundraising events. Visit their website for current ways to give, upcoming events, and other ways to get involved.
To find out more about becoming a member of DSL, or to learn about the services and work they do, check out their website. You can also get in touch by email.
FAQ
What is Down Syndrome Limerick?
Down Syndrome Limerick (DSL) is a parent-led charity supporting families in the Limerick region who have a child with Down syndrome, from the point of diagnosis through school age and into adulthood. It receives no state funding.
What services does Down Syndrome Limerick offer?
DSL offers services including Speech and Language Therapy, Occupational Therapy, parent and baby sessions, counselling, a Parent Link Liaison who contacts new parents directly, and family events that connect parents with others on the same journey.
How can I support Down Syndrome Limerick?
You can support DSL through donations or by taking part in their fundraising events. Their website lists current ways to give and get involved.
Where can I find more information or get in touch with DSL?
You can visit the Down Syndrome Limerick website or email them directly at info@downsyndromelimerick.ie.
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