“He was Daithí, My Son, My Child”; One Mother’s Story with a Down Syndrome Diagnosis

Sorcha McManigan

March 15, 2021

Down Syndrome Limerick

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Charlotte Hanley is a mum to three gorgeous boys and explains her birthing story with her youngest son, Daithí. Charlotte takes us through the moment she discovered her beautiful little boy was born with Down syndrome.

The mum-of-three describes how Down Syndrome Limerick (DSL) stepped in at one of the most vulnerable stages of her life to offer their unwavering support, services and kindness. She applauds their innovative leaders and how they unite a community through their incredible 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 as I was going on 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 whilst preparing the lamb for the hoard of people descending upon us, I started to have 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 to NICU 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 her he was fine; that I would take him back to the ward with me; my baby was fine and I was the best person to take care of him.

“My baby” – those words aroused a feeling that had not 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

Down Syndrome

What followed were days of battling to breastfeed. It was the only thing that I felt I could do for him. The lactation consultant was amazing, going above and beyond for me, putting me in contact with other mothers who had successfully fed their children with Down syndrome and who had to battle with hypotonia (low muscle tone), pumping and positioning to make latching less exhausting for their babies.

When I went back to 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 this support from others which I had never felt before – ever in my life – people that 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 and 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 days of my life. We still had many emotions running around 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 that 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 she was so positive about everything.

Louise was in touch every couple of days. She was so kind, so empathetic; answering my questions and addressing my concerns. Louise came to visit us when Daithí came home from the hospital. He was one month old. She scooped him up and didn’t leave him out of her arms for the whole time she was with us.

We Felt Welcomed and Part of The Community

Down syndrome

She was besotted with him too. It was reassuring to talk to someone that felt my feelings, that 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 in Down Syndrome Limerick – Speech and Language Therapy, Occupational Therapy, parent and baby sessions, counselling etc. We received an invite to a family fun day organised by the charity where we could meet other families. Accepting the invite, we went along and, from that moment, we no longer felt alone on this journey, we felt welcomed and part of the community.

All these families had their lives changed; they found themselves travelling a different road. These families were truly accepting of life on this road and were more than willing to take our hand on those first few steps along with it.

Down Syndrome Limerick is So Deserving

Down Syndrome

Down Syndrome Limerick is parent-led. 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 you from the minute you find out about your baby’s diagnosis, right through school age and into adulthood. It is a small charity that receives no state funding.

It has innovative leaders willing to sacrifice their time for the betterment of the overall community so that people with Down syndrome have the support they need to achieve their maximum potential and to live life as independently as possible. DSL is so deserving of this charity of the month award. I don’t know where we or the other families would be without DSL.

Support Down Syndrome Limerick

Down Syndrome Limerick Event

To help families, just like the Hanleys, you can support Down Syndrome Limerick by getting your runners on to join their virtual 21k in 21 days. The event starts on March 1st and ends on World Down Syndrome Day, March 21st. Register for the run now, and raise some much-needed funds for the charity through walking or running.

If breaking a sweat doesn’t appeal to you, you can text DSL to 50300 to donate €2 or click the link to donate as much as you would like.

To find out more information about becoming a member of DSL or discovering the services and work that they do, check out their website. To get in contact you can also email them.

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