Carragh O'Neill Fox



Our daughter Carragh

Mandy O'Neill and Marty Fox were so excited when they were expecting a baby. Their daughter Carragh was diagnosed in-utero with an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13


"I was so proud that my body was Carragh's safe haven for those 38 weeks - it was her home"

 

"Our story began on the 20th March, when to our surprise we discovered we were expecting a little bundle of joy. The initial shock quickly wore off and excitement of our future as a family set in, when I worked out the dates I realised we would be parents just in time for Christmas, our baby would be due November 17th. I dreamed about my first Christmas as a Mammy and was so looking forward to this exciting new chapter of our lives.

My pregnancy continued quite normally, I never had any real symptoms or morning sickness and often wondered what all the hype was about, I found the first trimester so easy, I slept like a baby. At one of my appointments a doctor even commented that this is “a text book pregnancy” making me so happy. I often did wonder was my bump very small, it wasn’t even noticeable for the first sixteen weeks. I just put it down to the fact I was very small myself. I had convinced myself I was expecting a little boy and I had even chosen a name for him, without informing my partner Marty.

Our twenty week appointment was set for the 3rd of July, we were so excited because we knew we would finally get to see our little baby on the screen. The sonographer seemed happy with our baby and printed us out a picture, we went home ecstatic that all seemed as it should be with our little one. We were even more excited because we had a 3D scan booked for Monday the 6th, we would get to see every little detail of our baby and we would find out the sex. I was so excited all weekend, I couldn’t wait for Monday to come so I would know whether to start buying pink or blue sleep suits.

Mandy O'Neill's daughter Carragh was diagnosed in-utero with an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13

My Mam and Dad, looking down on me...


- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

 

So excited... My Little Princess!

Monday finally came, we travelled to our 3D scan so full of excitement and joy, we spent the journey guessing the sex and planning our first holiday as a family. We had never even imagined that the journey home would be filled with such worry and sadness. The sonographer was such an amazing lady, she put the scanner on my belly and we could see how much our baby was moving. She then announced that we were expecting a “little princess”, my mind filled with thoughts of pink dresses and nail polish. I knew then, I was carrying my best friend in my belly.

The sonographer then expressed some concerns. She was worried that our baby was very small for dates and was also concerned that she wasn’t swallowing the amniotic fluid as she should have been. I asked her if there was a reason why she wasn’t swallowing and she said it may be a chromosomal problem. I couldn’t even remember what a chromosome was. I remember hearing it in biology class years ago but not actually listening, lying on the bed that day I wished more than ever I had listened in biology class. Fear, panic and worry took over. I was so worried that there may be something wrong with our little baby. The sonographer referred us to the Rotunda hospital in Dublin to a specialist Fetal Medicine unit. We were given an appointment for Thursday the 9th. The next few days were unbearable, we didn’t sleep or eat and couldn’t stop crying. We clung on to the hope that this was just routine and that our baby was just going to be small, like her Mammy.


"I was carrying my best friend in my belly"

Thursday morning came, we travelled to the Rotunda for 8.45 we never knew this would be the first of many trips to Dublin. We were met in the Fetal Med unit by a lovely midwife, she brought us to a private room and began explaining the problems our little girl had shown during her 3D scan, I just couldn’t take it all in. The Consultant then came in and introduced herself to us and explained she would do another scan. It was during this scan we also learned our little girl had quite a large hole in her heart, this was so frightening, I couldn’t believe what I was hearing. We decided on an amniocentesis, as this would confirm if our little princess had a chromosomal abnormality. I will never forget that needle going into my small bump. Our world crumbled beneath us. Walking out of the hospital that day we didn’t know what our future held or what future our little girl would have. Our hearts were truly broken. The results of our amniocentesis took longer to come back as they had to be sent to Glasgow,

It took almost three weeks, the longest three weeks of our lives, the not knowing was the hardest part. Fear, worry and hope filled each day until I finally got the call with the results.

Once again our world crumbled beneath us, it was confirmed our baby did have a chromosomal abnormality, although it was extremely rare. Our princess had an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13, I did not know what any of this meant, all the biology classes in the world could not have prepared me for this diagnosis. We were back in the Rotunda the next Thursday to discuss the results of our amniocentesis, while all of this was going on and I was so filled with fear and sadness my little girl was fluttering around inside my belly reminding me that she is still here with me and needs me to be strong for her and so I did.

Mandy O'Neill's daughter Carragh was diagnosed in-utero with an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13

Loving being with my mam...


- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

 

Words matter especially at times like this...

We were back in the Rotunda to discuss our baby’s diagnosis. I was so pleased to see that it was the consultant who had done our scan and amnio that was meeting with us that day. She was such a nice lady and had made me feel at ease the minute I met her. Our consultant carried out another scan to check our babys growth and to see if there had been any change, I was so shocked to learn that our little one only weighed almost one pound by now we were 24 weeks pregnant.

Our consultant then began to discuss the results of our amniocentesis, she explained the chromosomal translocation and the effect it was having on our little girl and her development. Our consultant never once used the term “incompatible with life” when talking about our unborn baby, she was so compassionate and caring and I knew me and my baby were in the best hands possible. She explained that she was very concerned that our little one would pass away inside me because of her complex heart defect and she also explained that if our little one would make it to birth and was born alive, comfort care would be the best option.

We were completely devastated, I couldn’t understand how my little baby that I could feel wriggling around inside me moving could be so sick, so sick and there was no cure, she couldn’t be fixed. Our dreams were shattered. I just couldn’t understand how this could have happened, or why it happened. I had never even heard of a trisomy before. I kept thinking maybe they got it wrong, I am only twenty-four, surely this can’t happen to twenty-four year olds, but it does and it can. This can happen to anyone of any age. I wondered was it our fault this happened our baby girl, was it something I did or didn’t do, or was it a faulty gene her Daddy or I was carrying, I was wracked with worry and guilt wondering was I to blame for my baby being so poorly.


"Our consultant never once used the term 'incompatible with life' when talking about our unborn baby.  She was so caring and compassionate."

We had blood tests done to see if it was anything to do with us, turns out this happened our baby at first instance, from the minute of conception our baby’s fate was determined. There was no explanation, no reason and for me this was the hardest part to except.

Mandy O'Neill's daughter Carragh was diagnosed in-utero with an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13

Thank you Mam and Dad...


- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

 

She kept reminding me she was there...

We decided to name our baby girl Carragh meaning “friend” and that she truly is, it was so nice that we had now given her a name, she had her own identity. We knew we wanted to give Carragh the best possible chance of life regardless of her diagnosis. We couldn’t give up on her, she is our little girl and it was our job as her parents to love and protect her, so we did.

The weeks and months that followed were among the most difficult of my life, it was so hard to try and continue with life as normal. I was always so worried that Carragh would pass away inside me, there was days when she was so quiet I was sure her fight was over but no she always reminded me with a big kick, I am still here mammy I am still fighting! I treasured every move and every kick, I lived for her little movements, they brought me such happiness.


"It was all worth it, she was here, she was incredibly beautiful, she was born sleeping but she was mine, ours, our very own little miracle who against all the odds made it this far."

Our consultant was amazing, she made sure Carragh was given every possible chance. We were seen by two paediatric cardiologists, they both checked Carraghs heart and unfortunately her heart defect was extremely complex, the cardiologists explained her heart defect to us in detail which was so helpful.

I am so grateful to our consultant for giving Carragh a chance, she always treated me and Carragh with so much care and compassion, to her Carragh was just as important as any other baby. Carragh continued to defy the odds, we never thought she would make it as far as she did.  She was a little miracle, a true fighter, our princess and our baby girl and we couldn’t wait to finally hold her in our arms and tell her how much we loved her and how proud we are of her.

Mandy O'Neill's daughter Carragh was diagnosed in-utero with an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13

Well Mam and Dad, aren't I just a beauty!


- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Finally we were given a date when we would get to meet our little princess. Our induction was set for Monday 2nd November, we were now 38 weeks pregnant and we couldn’t believe we made it this far, no one could. Our little girl was a true fighter. Labour was induced at 10:45 a.m. Monday morning. Labour was long and difficult, we had Carraghs heart checked before 8 p.m. that evening and her little heart was still beating. But labour was tiring for our beautiful baby girl and she was born sleeping at 11.43 a.m. Tuesday 3rd November.

I will never forget that moment when I first saw her perfect little face and she was placed on my chest. The love I felt for her was indescribable, I thought my heart was going to burst with love and pride.  It was all worth it, she was here, she was incredibly beautiful, she was born sleeping but she was mine, ours, our very own little miracle who against all the odds made it this far. Carragh has given me the gift of motherhood, she has allowed me to experience the intensity of a mothers love and I am so thankful for that. Carragh never experienced life outside of my womb, her little life consisted of 38 weeks inside me where she lived, grew and was loved and to me that is truly amazing, a life of knowing only love. I am so proud that my body was Carraghs safe haven for those 38 weeks, it was her home.

 Mandy O'Neill's daughter Carragh was diagnosed in-utero with an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13

All I knew was love... thank you Mam and Dad


- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I was her home and I am so privileged to have carried her and to call her my baby girl. I would do all of it again, Carragh was worth every minute of it. She truly is a miracle, my miracle, our miracle. We are so incredibly proud of our baby girl Carragh, she is the light and love of our lives.


 

PRESS

 


- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

CHROMOSOMAL TRANSLOCATION resulting in Trisomy 7 and Monosomy 13

Mandy O'Neill's daughter Carragh was diagnosed in-utero with an unbalanced chromosomal translocation resulting in Trisomy 7 and Monosomy 13
Links

 

Feileacain: Support group for parents