Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)

Nina’s Story



Nina’s Story

By Jan Foster




We were thrilled when we found out, just before Christmas 2019, that I was expecting our third baby.

Having had a previous miscarriage and experiencing bleeding throughout the first trimester, it was a very anxious time. It was only at around 18 weeks, not having had any bleeds for over two weeks, that I began to settle into the pregnancy and feel comfortable enough to tell our other children that they were going to have a little brother or sister. Unfortunately that was all shattered at 21 weeks when I attended my anomaly scan. Because of COVID restrictions, I had to attend the appointment on my own and I have this distinct memory of thinking, as I was driving to the hospital, that it must be awful for the women who get bad news at that scan, having to be there alone. I had no inkling that I would be one of them.

At the outset, the midwife explained that she would be as brief as possible in order to reduce the scan time, again due to COVID. As the scan progressed, I noticed the midwife was spending a lot of time looking at the baby’s heart, asking me to turn this way and that so that she could get a better look. It was far from brief. When she finished the scan, she explained that the baby was measuring smaller than expected and that she had some concerns about the baby’s heart. She couldn’t tell me in any more detail; I would have to see a consultant for that. As the midwife left the room, I was left to ring my husband and tell him. I couldn’t hold back the tears.

Luckily I was seen very quickly that same day by a consultant. He was also concerned about the baby’s heart and thought it looked like there was an AVSD, a hole in the heart. I was referred to the paediatric cardiologist in the Coombe and was lucky enough to get an appointment with her the following week. After a very thorough and detailed scan, she felt the baby had a condition where the arteries carrying the blood from the heart were the wrong way around (TGA), as well as having a hole in the heart (VSD). The baby was measuring even smaller on the centile charts than at the anomaly scan. The heart defect would require surgery very soon after the baby was born and I would have to deliver in Dublin, and most likely remain there for about six weeks after the baby’s surgery. I was upset both at the thoughts of having to let my tiny, new-born baby undergo major heart surgery, as well as having to leave my other two children behind for six weeks.

At the next appointment back in Cork, my consultant suggested we consider having an amniocentesis performed. The baby’s small measurements and heart defect were two red flags and he felt maybe there might be an underlying cause for both. By this time we had of course referred to Dr. Google quite often. Trisomy 13 and 18 were terms that kept popping up. Until then I’m not sure if I even knew what those trisomies were, or what Edwards’ or Patau Syndrome meant. I soon found out that neither of them was a positive prognosis, both deemed “incompatible with life”. At that stage we refused the amniocentesis. While we were incredibly anxious, we were still hopeful that we were just having a small baby who happened to also have a heart condition.

Three weeks after our initial appointment with the cardiologist, we returned to Dublin for a follow-up. After another long and detailed scan, it now looked like the baby actually had a different heart defect, one where both of the arteries come from the same side of the heart, rather than one from each side (DORV). The good news was that it wasn’t as serious as the condition previously diagnosed, but the bad news was it had a much higher association with chromosomal anomalies. This was when we finally decided to have the amniocentesis. While we knew it wouldn’t change the course of events for us, we felt that finding out one way or another meant either we could stop worrying, or start preparing ourselves for what lay ahead. Two weeks later we got the confirmation of what we were dreading: our baby had Trisomy 18, Edward’s Syndrome. We also found we were expecting a little girl. We called her Nina.

Our consultant explained the options we had, explaining that there was only a small chance that Nina would make it to term, if she got that far she may not survive delivery and if she beat those odds, the most we could expect was a few hours with her. We were devastated knowing that our much longed for baby wasn’t going to able to stay with us, that we might not even get to meet her, to hold her, to tell her how much we loved her. Then we had to turn around and relay this news to our three and five year olds. We explained that Nina was very small and her heart wasn’t working properly, that we weren’t sure if she would stay alive until she was born and that if she did, she was going to have to go to heaven very soon. I don’t really think our little girl understood, but her older brother began to cry, saying he didn’t want the baby to go to heaven. Having to shatter their innocence like that is something no parent ever wants to have to do.

The next few weeks were tough. Every morning I’d lie in bed until I felt Nina kick, reassuring me that she was still there. At each scan she was measuring smaller and smaller on the centile charts. We cried so many evenings after we put the kids to bed, hoping that we would get to meet our precious baby girl, but knowing that we wouldn’t get to see her grow up. We were heartbroken and terrified. We tried to make as many memories as we could, in spite of being in the middle of a global pandemic. I took far more photos of myself pregnant with Nina than I ever did with the other two. We visited Fota, we went to beach frequently (I even braved swimming in cold Irish waters so that Nina could experience it), we spent a lot of time in one of my favourite places in West Cork and every night we read a bedtime story to Nina as well as the other two. We weren’t sure how long we would have her with us, so we did our best to make it all count.

When Nina made it to 36 weeks, we began to start making plans for her birth. At her initial diagnosis, the consultant had explained that usually babies with Edwards’ Syndrome were induced for a vaginal delivery to spare the mother major abdominal surgery. However, when we asked if a baby as small as Nina would be more likely to survive a caesarean section, he told us she would have a much better chance and thankfully he readily agreed to perform one. I was scheduled for a section at 38 weeks and one day. The night before I went in to have Nina, we read her bedtime story together, her brother and sister kissed my belly goodnight and told Nina they loved her and hoped they would get to meet her. It was what we all wished for, but knew there was only a small chance that wish would come true.

Leaving home the following morning, kissing my children goodbye was emotional. I wasn’t going to see them for three days and I wasn’t expecting to be coming home with a new baby. The midwife looking after me that morning was amazing; kind and understanding without being too emotional or creating a morbid atmosphere. I remember her using the Doppler to check on Nina’s heartbeat and asking us if we wanted to keep listening to it, that she would hold it there as long as we liked. It was just a lovely gesture, something small that meant so much to us. We just hoped that Nina’s little heart would keep going long enough for us to hear it on the outside too. Our bereavement midwife, Niamh, was with us all that morning too. Having a familiar face through everything was so reassuring, especially in the theatre before the surgery began, when my husband had to stay outside. I don’t think she realised how calming her chatter was.

The birth itself was very straight forward. At 10.56 am on the 18th August, Nina came quietly into the world, but the doctor was quick to let us know that she was moving. She was briefly taken to be cleaned and Niamh made sure she was wrapped in the blanket we had chosen for her. She made soft crying sounds before being placed on my chest. I remember watching her breathing and whispering to her to just keep doing that, there were so many people who wanted to meet her and all she had to do was just keep breathing. She proved everybody wrong by doing just that!

By 11.56 am, I was back in my room on the labour ward, and Lachlann and Elsie had been allowed in to meet their new little sister. It was something we had hoped so hard for, but we had never been guaranteed, so we were just thrilled to have all of our family together. We had a christening ceremony in the room, which if I’m honest I can’t really remember as I was still in a bit of a drug induced haze. We read, “Guess How Much I Love You” to Nina and her siblings gave her her little pink teddy. They both got to hold her and we took so many photos. I stayed in that room down in the labour ward for most of the day. In hindsight, I wonder were they waiting to see how things would go with Nina, so they would know which ward to move us to. There is a separate ward for families who have suffered a loss. That evening, after showing everybody how strong she was, we were moved upstairs, and my husband was allowed to stay with us. I can’t remember too much about that night, only that we took turns holding Nina while the other one slept. There was no way we were going to let her out of our arms and put her into the cot.

The following morning, the consultant from the neonatal unit came up to see Nina. Her breathing seemed fine, although you could see from her chest that it was a bit more work for her than usual. She was able to swallow so I could feed her, albeit from a syringe, and her oxygen levels were good. He told us that if she was still okay on Friday, that we’d be allowed to take her home. Looking back, I’m not sure why he wanted to wait until Friday. Other than the fact that I had a section that normally requires a three day stay, I can’t see any reason why we should have stayed in the hospital, as even if Nina had taken a turn, the only interventions on offer would have been in terms of providing pain relief.

That afternoon, the bereavement midwife called. We asked about the possibility of Lachlann and Elsie getting to visit again. We had been on the phone home and Lachlann had gotten himself and Elsie dressed into their “smart clothes” to go and visit Nina again! She wasn’t sure if she could arrange that (due to COVID) but she asked us if we’d like to bring Nina home instead! We jumped at the thought of that!

Shortly after she left to see if that could be organised, the neonatologist arrived and it was very clear that he wanted us to wait until Friday. He explained that there were supports that should be put in place before we left for home. Basically, that we were taking our baby home to die and we needed to be prepared for that; for how that might look and how we might react. He did have a point, but we had decided that as long as my consultant was happy to let me go home so soon post-surgery, that we were going the next day. There was no point in waiting as there was no benefit to Nina to staying in the hospital, and we weren’t guaranteed that she would still be with us by Friday.

Once that was settled, the wheels were put in motion for discharge. We met with the nurse liaison for children with life limiting illnesses (a much nicer term than incompatible with life), we got prescriptions for medications we might need for Nina, our GP and public health nurse were notified and our details were given to The Jack and Jill Foundation. Then there was the really practical stuff, like the fact that I hadn’t gotten the car seat out of the attic or even bought a packet of nappies. I had had a pregnancy where rather than cleaning up the pram and washing cot sheets, I kept on top of the housework in case the worst happened, so that the place would be at least presentable for her wake/funeral. My sister-in-law was dispatched to root out the car seat and wash the covers as well as finding the tiniest little nappies she could so that we would be ready to bring her home the next day.

Nina spent that night in our arms again. I remember watching “The Help” on my phone with her snuggled into my chest on the recliner. It’s one of my favourite films and I wanted to share it with her. On Thursday morning, my consultant called up and said he was happy for me to go home as long as I felt up to it. I honestly felt fine, but I’d probably have faked it even if I didn’t. There were a few last minute things that needed sorting before we were discharged. It seemed like we were waiting forever, but around lunch time we were finally allowed to go. We had never expected to be able to bring Nina home with us and couldn’t quite believe that it was happening. We hadn’t told Lachlann and Elsie and they were just so excited when we pulled into the driveway.

Thursday evening was so busy with everybody calling to meet Nina. It was such a change for us because we had been so careful during the pregnancy due to COVID restrictions that the only person who had been in our house for months was my mum when we needed to mind the kids for hospital appointments. It was just so wonderful introducing Nina to all of her aunts and uncles, but it was busy. Over the course of Friday and Saturday, the only time we had to ourselves as a family was in the evenings. We brought Nina upstairs when the other two were getting ready for bed and we had bedtime stories all five of us together. Lachlann and Elsie showed off their toys and bedrooms to their baby sister, they held her and sang to her and tickled her toes. On Saturday evening we had a family movie night, watching “Monsters Inc.” while snuggled together on the couch.

I had been worried about Nina on the Saturday. I couldn’t put my finger on it, but I had noticed a change in her. By Sunday morning, we knew she was starting to slip away from us. At around 10 am, she stopped breathing and we actually messaged our families to tell them she had gone. Neither of us could face picking up the phone and uttering those words, but we knew we had to let them know. A few minutes later, as we sat sobbing in the bed holding her in our arms, I thought I saw her take a breath. At first I thought that I had imagined it, but slowly she took another and then another. She had had an apnoea, a prolonged period of time without breathing. Over the next two hours, she had two more apnoeas. In that time, our family gathered and everybody had the chance to say goodbye, to kiss her and tell her they loved her. Her third apnoea was her final one, and she passed away peacefully in our arms.

Through CUMH and Féileacáin, we were given the use of a cuddle cot to keep Nina in. It is a cold mattress that we put underneath her in her Moses basket. It allowed us to keep her at home with us for two more days, and on the Tuesday, only a week after we had welcomed her into the world, we laid her to rest. Closing the lid on her casket and leaving her behind us as we walked out of the graveyard will remain the hardest thing I have ever done in my life.

I know there might be those who say they wouldn’t change a thing, but if I’m honest, I have to say I would. I wish that Edwards’ Syndrome was still something I was not aware of, that I didn’t have to endure a pregnancy filled with dread, and above all I wish I could still hold her in my arms. But through it all Nina truly taught us the essence of hope. That in the face of the cruellest circumstances, there is always the possibility of a positive outcome, the chance of a sliver of happiness. In dark and cloudy times, Nina was a ray of hope. She showed us the meaning of strength; her own strength in defying the odds that were always stacked against her, and she made us discover the strength we have within ourselves, the strength we have needed to survive through her diagnosis and to carry on since we have had to say goodbye to her. For that, I would never change the time we had with our precious baby girl, our darling Nina.