‘This is all my fault. I did this to her.’ For months, I felt worthless.’: Mom embraces daughter’s Down Syndrome diagnosis, urges ‘see the positives’

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“My name is Aoife, I am 27, and a proud mommy to Croia (CR-EE-AH), who is 19 months old. I am engaged to Croia’s dad, Craig.

I met Craig 3 years ago, on the 14th of July 2018, and fell head over heels straight away. I thought it was all too good to be true. He was too perfect, we got on way too well. Turned out we were just meant to be: he was my person. We never spent a day apart and moved in together almost straight away. Craig asked me to be his girlfriend on the 10th of September, and I was introducing myself as his wife from there on in. We got engaged a year later, on the day of Croia’s Christening.

A man holds his partner on his back
Courtesy of Aoife

We found out we were pregnant on the 12th of May 2019. We had been out for drinks the night before, but when I woke up I just felt different. I knew it wasn’t a hangover because I wasn’t after drinking much. I had a little think and realized I had missed a period but had paid no mind because I was on the pill. Just as a precaution, I took a test. It was positive.

A woman and her partner stand outside an old castle
Courtesy of Aoife
A baby jumper and a sonogram picture
Courtesy of Aoife

I sat in disbelief for a few minutes, I was in pure shock. Craig was sitting on the bed grinning from ear to ear. Once it sank in, I cried happy tears. We were over the moon! We were going to have a baby, and our perfect life together was about to get even more perfect.

The pregnancy test said ‘pregnant 1-2.’ When we made our doctor’s appointment, she told us we were only about 4 weeks pregnant.

It’s a scary time finding out you are pregnant that early. So much can go wrong in those early stages, so any little pain used to scare the life out of me.

I had so many hopes and dreams for this little baby that was the size of a poppy seed growing in my tummy. The main thing I wished for was a happy and healthy baby.

I loved being pregnant. I wasn’t sick much, only after long car journeys. I still had loads of energy: this obviously changed near the end of my pregnancy, but I was still able to work and get out and about. I loved every kick and moment I felt, and I would get the camera out to video nearly all of them.

A man leans on his wife's pregnant belly
Courtesy of Aoife

We went for our first scan at 11 weeks. We sat in the waiting area absolutely elated. We were so impatient and just wanted to get in to see our baby. As the doctor was scanning me, I was lying on the bed like a giddy schoolgirl watching our baby and seeing the pride and excitement in Craig’s eyes.

The doctor stopped scanning my stomach and just looked at us and said, ‘I’m not happy with the shape of the head, you will have to go sit outside so I can get a second opinion.’ We were shocked. I felt sick. This was our first baby, our first scan, and our first impression of our hospital. How could someone show no empathy in a time like that to a young couple clearly over the moon to be seeing their first baby?

We were left sitting in the waiting area for an hour watching all the other excited parents go in and out delighted after seeing their babies while we sat there upset, tears flowing.

We went into the room to get our second opinion. The sonographer explained to us there was some extra fluid on the baby’s neck, which can be a strong marker for Down Syndrome. She told us she was going to book an appointment for us in Dublin so I could get my bloodwork done to confirm if this was what the fluid meant.

Initially, I was just in shock. I was 25, I thought this could only happen to older parents. When we went home, we started talking about it. We both had the same response. We were so lucky to be able to say we were having a baby. Not everyone is lucky enough to say that. Whatever the outcome, that baby was ours, and we would love them unconditionally.

A woman and her partner hold hands
Courtesy of Aoife

One week later, we got the call for our appointment in Dublin and got our blood test. As I was signing the form, I learned we could find out the gender and obviously said yes. The results would take about a week to come back. The days felt like years waiting for the call.

The morning came where our doctor called with the news that the baby had a high possibility of having Down Syndrome. I responded ‘No problem, I was expecting that result anyway, can we please find out the gender?’ There was a pause, and a routine question I never wanted to hear—’Do you want to discuss your options first?’—’Not a hope’ was my response. Then we found out we were having a girl, and I literally cried my eyes out before he finished the sentence. We started telling everyone the news in the following weeks.

This would be when my mental health went downhill. I started to blame myself thinking this was something I had done. Would she be happy? Would she be healthy? Will she live a ‘normal’ life? Will people make fun of her? What had we done wrong? How could we have avoided this? Of course, looking back, I know this is something that just happens, but when your mind is playing tricks, it can just take over. I allowed myself the bad days, but Craig helped me focus on the positives in every day and was there for me to talk whenever I needed it.

I remember going to tell my nanny and being a ball of emotion. I was her only granddaughter for 18 years and was now giving her her first great-grandchild. When I told her about the Down Syndrome, she looked at me and said, ‘So what? God wouldn’t give you anything you couldn’t handle, he only gives special babies to special parents.’ This is something I keep with me every day and say to anyone who writes to me facing a diagnosis.

At my 28 week scan, we found out Croia had a blockage from her stomach to her bowel. This would mean she would need surgery once she was born as she wouldn’t be able to feed. The blockage would mean she would be unable to poo. She would just vomit if she were to feed. Again, my sadness crept in here—’Why can’t my body work properly? This is all my fault. I did this to her.’ From there everything went smoothly.

In the early morning of the 28th of December, at 34+4 weeks pregnant, my water broke, and I was off to Dublin to meet my baby girl. We had Croia via C-Section as she was breech, and I did not want her moved in case it put her under any unnecessary stress. She arrived kicking and screaming at 11:57 a.m. She was beautiful. She was perfect. She was ours. I got to see her for about 5 minutes. She looked into my eyes and touched my face. I can’t even describe the feeling.

A woman and her partner with their newborn daughter
Courtesy of Aoife

Then, she was brought to the NICU because they had to set her up for her drip-feeding before she could be scheduled for surgery. I couldn’t see her for about 4 hours as I was waiting for the numbness of my spinal tap to wear off. When I held her and looked at Craig standing there proud as punch, it was like our lives were complete. At a day old, Croia sat up in my arms, and from that day, I knew my girl was going to be a fighter and break any limitations ahead of her.

A baby lies on her back in the NICU
Courtesy of Aoife
A woman holds her newborn while her partner stands behind
Courtesy of Aoife

Croia had surgery on her blockage when she was about 5 days old. Seeing her afterward with an epidural in absolutely broke me. It killed me seeing her so groggy and weak, but I knew she would be on the mend soon. She had to stay in hospital for 4 weeks after she was born until we had her feeding from her NG tube as well as some from a bottle. We were so excited to get her home and have some alone time as just us 3.

Parents hold their baby in a carrier at the hospital
Courtesy of Aoife
A father holds his newborn while his partner puts her hand on his shoulder
Courtesy of Aoife

Post-natal depression hit me like a bus. I suffered from it for about 9 months. After a couple of months of feeling worthless, I learned to make a conscious effort to talk to Craig and my doctor and to accept anything that would make me feel better. I knew I had to be okay and happy for Croia to be okay and happy. You cannot pour from an empty cup.

Croia has always been the happiest baby. She always has a smile on her face that lights up any room. She is a very determined and independent little girl. She has always pushed herself to be able to do what she wants to do. She has broken down any misconceptions I had about Down Syndrome.

A little girl with Down Syndrome sits on a couch with a toy rabbit
Courtesy of Aoife

In every physio appointment, she has worked so hard to do anything she has been shown and has smashed every milestone so far. Maybe just a little slower at walking, but that’s okay, it allows her to be my baby a little bit longer. She loves music, she loves to be in the pool, she loves her teddies. Most of all she just loves kissing and cuddling. She is the most loving little girl I could ever dream of.

A little girl stands on a rocky beach
Courtesy of Aoife
A baby girl holds a Mickey Mouse toy
Courtesy of Aoife

I wouldn’t change her for the world, but I will do whatever I can to change the world for her. I will never let her feel defined or limited by a diagnosis. She is not the girl who has Down Syndrome, she is Croia. She will do whatever she wants to do in life. We will bring her up to be strong-minded and teach her to speak up for herself and to reach for the stars. She is just as capable of things as anyone else is.

She has taught us and our families many lessons. To be patient. To find the good and the happiness in every day. To celebrate every little achievement. And to not put pressure on things—what’s meant to be will be, in its own time and not a second sooner.

Parents holding their baby girl
Courtesy of Aoife
A baby girl with Down Syndrome sits in a stroller
Courtesy of Aoife

As I sit and think of things I am proud of, a million and one things circle my mind. I am so proud of her every day for every little thing she does. I am so proud of her strength, her independence, her determination, her unconditional love, and her happiness. She makes every day an amazing day, a day of smiles and laughs. She brought happiness we never knew existed. Every milestone she reaches, I am proud as punch and so excited for her. We were always told, ‘She won’t do this until…’ so when she does it before then, we just feel so blessed and happy for her.

A little girl wearing overalls shrugs her shoudlers
Courtesy of Aoife

My hopes for her future are just for her to be happy and to do whatever she wants to do in life. She is just about to start her school journey, and I cannot wait to see the person she is going to become. I dream of a world of acceptance for her. A world where people don’t look down on differences, they celebrate them.

I want people to see that what’s different makes you beautiful. An extra chromosome doesn’t make her less of a person, if anything, it just brings more happiness and love into your life. I want people to be educated, as people with Down Syndrome in today’s world are completely different from years and years ago. Times are changing. If you see our page, you will see Croia is doing everything other kids her age are doing, so why should she be treated differently just for having that extra chromosome? When you judge someone based on a diagnosis, you miss out on their abilities, beauty, and uniqueness.

We are so lucky to have been blessed with this perfect little girl, and we want to share her beauty and happiness with the world. She has already had such a huge effect on people, and this is only the beginning for her.

Parents wearing white hold their baby girl at Christmas
Courtesy of Aoife
A little girl with Down Syndrome wearing overalls
Courtesy of Aoife

As I wipe my eyes finishing this, I want to thank everyone for taking the time to read our story. Croia is such an inspiration and just puts life into perspective. See the positives in every aspect of life.

Croia, when you are reading this when you’re older, always know you are loved unconditionally. I want you to use your smile to change the world, but don’t let the world change your smile. I hope you will always be strong-minded and speak up for yourself to change misconceptions about Down Syndrome and never accept anything less than you deserve, you teach people how to treat you. You can do anything.”

Parents hold their baby girl outside
Courtesy of Aoife
A little girl wearing a leopard-print dress makes a silly face
Courtesy of Aoife

This story was submitted to Love What Matters by Aoife of Waterford, Ireland. You can follow their journey on  Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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