There are moments in motherhood that divide your life into a before and an after. For me, one of those moments came at 37 weeks pregnant with my first child, when a seemingly innocent question changed the course of my pregnancy and ultimately introduced me to a world I had never expected to enter: motherhood as the parent of a child with a disability.
I remember asking the registrar in The Coombe, Dublin, how much she thought my baby weighed so that I could mentally prepare for her birth. I had signed up for a waterbirth and, like most mothers, had my birth plan all set out. I was nearing the end of my pregnancy and, like so many expectant mothers, I was thinking about the baby I was about to give birth to. That question led to further measurements, and we discovered that my baby was exceptionally small for her gestational age and that the measurements weren’t adding up as they should. There was a lot of silence and discussion about percentiles that sounded nothing like what I was reading on the What To Expect App.
That unassuming question was the beginning of my journey as a special needs mother. My world was rocked with uncertainty, and suddenly we were preparing for the traumatic possibility that our daughter may not survive long after birth – let alone have a disability.
You can listen to my full birth story on Ireland’s Birth Stories podcast with Cora Gernon, where I talk in more detail about those final weeks of pregnancy, my daughter’s birth and the beginning of our journey together.
When expectations change, everything changes
Pregnancy comes with an enormous amount of anticipation and preparation. We prepare for trying to conceive (TTC), labour, birth, feeding, sleep and bringing our baby home. We attend antenatal appointments, pelvic physiotherapy and labour preperation classes, buy tiny clothes and spend months imagining the person we are growing and going to meet. What we don’t often prepare for is the possibility that our baby may be born with a disability, chronic illness, genetic condition or lifelong health condition. I certainly didn’t. The fact that we don’t have any siblings or children in our family system with a special needs child made this a blind spot for us.
There was never any discussion about breastfeeding if your child spends days, even weeks, in the Neonatal unit or intensive care or reassurance that in these potential events, everything you had mentally planned for will be different. There was no reference to potentially going home without my baby during antenatal classes, as so many mothers of newborns do in the postnatal phase. Possibly one of the most emotional challenges of all, there was no discussion about how to handle other people’s reactions to your news about your new baby – but that’s another blog altogether.
In my own experience, there was not one single part of my perinatal journey that prepared me for becoming the mother of a child with a disability. I don’t say this as a criticism of the professionals who cared for me, but rather as an observation about a wider gap in how we prepare women for motherhood. We understandably focus on healthy pregnancies and healthy babies, and there are good reasons for wanting to protect women from unnecessary anxiety. By the way, many children with disabilities are healthy babies! However, in trying to protect mothers and fathers from difficult but realistic possibilities, we can sometimes leave them completely unprepared when those possibilities become their reality.
“When expectations change, everything changes. Your baby will be perfect in your eyes – and love will become the foundation from which you learn to navigate everything else.“
There are many ways a baby can be born with disability, and typically a diagnosis isn’t determined until after birth. For some parents, the diagnosis comes during pregnancy; for others, it comes in the delivery room, during the newborn period or much later. For us, it came a few days after birth, while our daughter was in NICU, with the aid of extensive genetic tests. Whatever the circumstances, the emotional transition can be enormous. I was it is fair to say both deeply in love with my newborn and also traumatised at the same time for a long time after. Not because of her disability but because the whole experience was so traumatic and I was in the postnatal phase, which is such an emotional whirlwind.
Disability is part of many families’ lives
The scale of disability among children in Ireland is important to acknowledge. According to the State of the Nation’s Children report, based on Census 2022 data, there were 131,764 children with a disability in Ireland, representing 10.8% of the child population. That is more than one in ten children. State of the Nation’s Children report
Yet conversations about the possibility of disability remain largely absent from our preparation for parenthood.
My own daughter was born with dwarfism, a rare genetic condition. Estimates for achondroplasia, the most common form of disproportionate short stature, are around one in 25,000 – 28,000 live births. For a parent, however, statistics become very different when the baby in question is your own.
Numbers cannot prepare you for sitting beside your newborn and wondering what their future will look like. They cannot tell you how to process the information being given to you, how to understand a diagnosis or how to reconcile the baby you imagined with the baby you are holding. They certainly cannot prepare you for the deep love. My daughter has given me a purpose and meaning in life I could never have imagined. Having her has infinitely changed me as a person and focus on what is important in life. I remember during that difficult time thinking often how I had wasted so much of my lifetime worrying about such mundane and unimportant things and vowed never to waste time like that ever again.
I wasn’t prepared for disability, but I was prepared to love my baby
If you are reading this because your newborn has just received a diagnosis, or because doctors have told you that they suspect your baby may have a disability or lifelong condition, I want you to know that you don’t have to figure everything out immediately. You may feel frightened, overwhelmed, angry, devastated, confused or completely numb. Or maybe you feel none of these and your journey feels different to mine. You may experience sadness for the pregnancy or early parenthood experience you thought you were going to have while simultaneously feeling an enormous love for your baby. Conflicting feelings can co-exist together, and you don’t have to choose between loving your child and acknowledging that this is difficult. I also want to mention that you may also have a completly difference perspetive and outlook to your partner – this is also okay! You may feel in denial or realistic, happy but sad or confused and consumed with love all at once.
You don’t have to understand every medical term or know what your child’s entire future will look like. You don’t have to become an expert overnight or have a five-year plan for your family while you are still trying to process what happened yesterday. You also won’t feel the same today about your childs disability as you will in one year or five years – believe me I know. Give yourself time, ask questions when you are ready, find people who understand and allow yourself to be supported.
Most importantly, remember that a diagnosis is only one part of your child’s story.
Your baby is still your beautiful perfect baby in your eyes. They have their own personality, character and capacity to surprise you, make you laugh and completely change your understanding of what matters. My daughter was never her diagnosis and I never wondered who she would be without her condition. She was, and is, my beautiful daughter, and to me she is perfect, loud and fierce in a petit package.
We need to make more space for the unexpected
I believe we need to have a wider conversation about how we prepare women for motherhood. And, we need even more emphais on maternal mental health at every age of stage of motherhood. This isn’t about frightening pregnant women or giving them a list of everything that could potentially go wrong. It is about acknowledging that babies are born with many different bodies, needs, conditions and abilities, and that parenthood does not always follow the path we imagined.
Some babies are born prematurely, some need surgery, some have chronic illnesses, some have disabilities or genetic conditions, and some have developmental differences that aren’t identified until later. In our case, disablity was the first unexpected diagnosis and there were more to come. These are all part of the reality of parenthood, yet our conversations during pregnancy can sometimes suggest that there is only one version of the healthy, perfect, normal baby we are all hoping to bring home.
Perhaps perinatal care could gently make more room for these possibilities without making them the focus of pregnancy. We could acknowledge that while many parents hope for a healthy baby, sometimes a baby arrives with additional needs, and if that happens, there will be people who can help and the journey will look different – not less. Preparing parents in this way doesn’t have to create fear; it may instead help them feel less alone if their reality turns out differently from what they expected.
What parents need after a diagnosis
When a newborn receives a diagnosis, parents don’t need somebody to make everything better – they need a system and support that helps hold them together. They need somebody who can sit with them in the uncertainty and recognise that this is a huge emotional transition. They need professionals who can explain things clearly without overwhelming them, who understand that they may need to ask the same question several times and have the same converstations over and over, and who can give them permission to have complicated feelings about what has happened.
Most importantly, they may need support both individually and as a couple as well as information about their baby. Or, they may not need any support at all and will navigate things in their own way and on their own terms! There can be value in a professional simply being present, listening and saying, “We don’t have to work everything out today. Let’s take this one step at a time.” Sometimes that calm, compassionate presence can be more valuable than having answers.
Parents need somewhere safe to process their thoughts and feelings, uncertainty and hopes. They need encouragement to trust themselves, build relationships with professionals they feel safe with and lean into their communities when they are ready. Over time, they will learn, find their support system who understand their child’s needs, discover services they didn’t know existed and become fierce advocates for their children.
Love will get you through
My journey into motherhood wasn’t the journey I expected and it was no less than any other mothers journey. In fact – I feel incredibly blessed to have a child with such a rare condition and that we were the lucky parents who were so blessed. There were many frightening moments and difficult days, many missed milestones in a system not established for disabled children, and there were times when I had no idea what our future would look like. I still don’t. But alongside all of that was an enormous love for my daughter, a confidence that I will do everything I can to best prepare for her future and that love became the place from which I learned to navigate everything else.
‘Your baby is still your beautiful perfect baby in your eyes. They have their own personality, character and capacity to surprise you, make you laugh and completely change your understanding of what matters.‘
That is what I want to say to the mother or father who may be googling online their newborns diagnosis or sitting beside their newborn right now, trying to understand a diagnosis and wondering what happens next. You don’t have to know anything or everything today, and you just need to trust yourself everday. You don’t have to pretend that this isn’t difficult and you dont have to pretend you have it all together. You simply have to keep getting to know and love your baby and take baby steps with them.
When expectations change – everything changes and love with get you through. Slowly, however, the life you never anticipated can become the life you know, and the child you worried about can become the child whose laugh, personality and presence you cannot imagine your life without. In time, you may discover what I discovered: the future you were so afraid of can contain more love, joy, laughter and possibility than you could ever have imagined. And that it’s okay not to fit the mould of those around you and find a community that you feel not just a part of but one that you will fight for.
Love will get you through.
About Orlagh Reid
Orlagh Reid is a mother, IACP Accredited Psychotherapist, Coach and Facilitator with over 15 years’ professional experience. Her work is informed by both her clinical experience and her lived experience as a mother whose first child was born with a disability.
In September 2026, Orlagh will facilitate When Expectations Change – Bridging the Perinatal to Postnatal Journey After a Newborns Disability Diagnosis for the Perinatal Mental Health Institute Ireland, specialist training for psychotherapists, counsellors, doulas, midwives and other perinatal health professionals who support mothers and parents following a newborn disability, illness or lifelong condition diagnosis. The LIVE Webinar training focuses on understanding the emotional impact of diagnosis and developing compassionate, confident ways to support families as they move from the perinatal into the postnatal phase.
Orlagh will also deliver the 90-minute live webinar for the Perinatal Mental Health Institute, When Expectations Change: Bridging the Perinatal to Postnatal Journey After a Newborn Disability Diagnosis, bringing together research, clinical experience and the perspective of a mother who has lived this journey herself.
Find out more about Orlagh’s work: www.orlaghreid.ie
Follow Orlagh on Instagram @thewellbeingpsychotherapist
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