Friday 20 September 2019

'Down Syndrome is only a small part of my beautiful daughter Lilah'

Lorraine O'Brien admits she worried about coping with daughter Lilah's condition. One year later, the mum of two tells our reporter she knows how lucky she is

Lorraine O'Brien with her daughter Lilah. Photo: Damien Eagers.
Lorraine O'Brien with her daughter Lilah. Photo: Damien Eagers.

Arlene Harris

Madeline Stuart is a 19-year-old aspiring model - who happens to have Down Syndrome. Determined not to let her condition stand in the way of her life, the Australian teenager is set to make history when she becomes the first model with an intellectual disability to walk the catwalk in Russia as she takes part in Caspian Fashion Week (April 21 to 24).

There are approximately 7,000 people living with the condition in Ireland and while not many are likely to follow in Madeline's footsteps, most can and will lead fulfilling lives.

In order to help this happen, the Down Syndrome Centre (DSC) in Dublin recently ran Mission 21 - a campaign to raise awareness and funds to help keep the centre up and running and providing much-needed supports for people living with Down Syndrome.

Lorraine O'Brien has two children - Harrison (3) and Lilah (1). She lives in Rathcoole, Co Dublin with her partner Brendan Ward and is a regular visitor to the DSC after their daughter was diagnosed with the condition last year.

"My pregnancy with Lilah was a nice surprise, which was going really well until my 20-week scan when the midwife said there was an issue with the measurements of her femur and humerus bones," she says.

Lorraine went back for a second scan in December 2014 and was informed that she had a one-in-2000 chance of having a baby with Down Syndrome.

"We welcomed our beautiful little girl into the world by C-section on March 13 2015," recalls Lorraine. "I immediately asked if she was okay and was told she was fine. The midwife came over and said they would need a paediatrician to check her out as they were concerned with her features.

"I can honestly say that at that moment, my heart broke." Brendan however stood by her side until the doctor came and confirmed that Down Syndrome (DS) was suspected but that Lilah was otherwise fine with no need for any oxygen or a stay in the NICU.

"We were told we could hold her and take her with us back to the recovery ward, so that's what her daddy did, he held her and minded her because no diagnosis was going to change his love for his little girl."

But the new mum felt less able to cope and became increasingly worried about her tiny daughter's future.

"I didn't feel the same as Brendan initially," she admits. "I was totally devastated even though this had been my fear throughout the pregnancy and now it had become my reality. I worried about how we were going to cope, how would it affect our lives, our family, her big brother Harrison, and would I even be able to love her?

"But I soon realised that of course I loved her and this was the reason I was so sad in the first place - I didn't want her to be different and didn't want her to struggle with the things other people take for granted.

"I discovered that my view on DS was outdated and uneducated and I was wrong to think like this.

"Also, right from the start we received so much support from family and friends that it made me realise how lucky we are."

Despite all the support, the 33-year-old found things very hard in the beginning as her baby struggled with several complications.

"The first four months of Lilah's life were tough," says Lorraine. "At six-days-old she was diagnosed with a heart defect which would require open-heart surgery in the coming months. This, combined with tube feeding and hospital visits, was a lot to deal with, but we did it and like the fighter she is, Lilah got through it so when we brought her home at four months, she began to thrive.

"As each day passed, the DS began to fade and she was just Lilah. She was so beautiful and so easy. In her short little life she had already brought so much good into our lives and it didn't take long for us to be completely smitten - we didn't care about a diagnosis - she was ours and no matter what her potential was or what her achievements were in life, it didn't matter because we would love her regardless.

"Shortly after that I discovered that the DSC was running a baby massage course and felt it was the perfect opportunity to meet other mammies in the same situation. So Lilah and I went along and had such a good time.

"It was more than baby massage class, to us this was a place full of support with a warm and friendly environment where people understood us - as a new parent of a baby with DS; it was just what I needed - to know we weren't alone. Lilah has just turned one and has already developed a distinct personality. She loves music, is a real daddy's girl, and loves playing with her big brother. Lorraine has the same aspirations for her daughter as for her son and says that people should not be defined by a condition.

"Inclusion is extremely important in the acceptance of people with disabilities in today's society, and we will do whatever we can to help Lilah meet her full potential," she says.

"Last year after Lilah was born, I felt that I could see DS everywhere I looked - but I didn't see the people, just their diagnosis. However now I realise that this is only a small part of anyone and to judge someone based on this is to miss out on the person, the personality and the individual.

"This year we are so thankful for our baby girl and the new outlook she has given us on life - and also for the wonderful families, new friends and amazing children we have been lucky to meet.

"We hope the public help keep the doors of the DSC open so our children can be given the opportunity to reach their full potential. It's a fantastic cause and deserves all the support it can get."

About Down Syndrome

• About 7,000 people living in Ireland have Down Syndrome, 110 babies with Down Syndrome are born in Ireland every year

• The Mission 21 campaign raised over its goal of €21,000 but funds are still needed to support children like Lilah and their families

÷ For more information see

Health & Living

Editors Choice

Also in Life