Scarlett Katherine O’Reilly

My story begins in December 2002. I was 36 years old and I had stopped breastfeeding my 12 month old son, Louie, and got pregnant again. I did a pregnancy test at Christmas which was positive. It was an unexpected and shock pregnancy. We already had Tilly, who was 4, and my partner’s son, Jamie, who was 6 had lived with us for the past year. Although a shock, the baby was still very much wanted.

I was surprised when, at my 12 week scan, they said I was actually 9 weeks pregnant, which was not the case due to being pregnant at Christmas but I was obviously measuring small for dates.

One strange thing from this time is that I was convinced that this baby had Down’s syndrome- this wasn’t a fear or a worry, it was just something that I knew. I used to say to my partner that this baby has Down’s and he used to tell me I was being irrational. But I knew.

I wasn’t too concerned however, as I believed that babies arrive when ready and my baby would arrive around 4 weeks earlier than their due date.

The sickness was horrendous, much worse than I’d experienced with Tilly and Louie (and that had been bad enough). The tiredness was also like nothing I’d experienced either. The awful sickness didn’t ease, even as I approached 20 weeks. I was very thin and generally unwell and I put this down to having another pregnancy so soon after Louie; the stress of my partner’s son living with us; and looking after three young children. But at 11 weeks pregnant I was admitted to hospital with low blood pressure. A routine scan was done which showed a bleed around the baby.

I went for my 20 week scan, and had refused all blood tests, mainly because due to my age, it would throw up an immediate risk factor and I knew that I would never end a pregnancy. In 2003, screening only picked up on Down’s and Spina Bifida (and remember, I already ‘knew’ that this baby had Down’s anyway). It was at this scan, that I was told that my baby had cysts on her brain and was asked to return in 4 weeks. The Internet was not on our phones and we did not have a computer at home so Googling cysts on the brain was not an option. Choroid plexus cysts were not mentioned. This was not a marker picked up by the sonographer.

I returned in 4 weeks, unconcerned and unworried. The scan showed that the cysts had disappeared but I noticed a dark area on the scan and pointed it out to the (same) sonographer, who sighed and said that it was my babies bladder and that she just needed a wee. I was told to go for a wander round and return in 30 minutes. I returned after 30 minutes, was re-scanned but the dark area was still there. The sonographer measured  my baby’s kidneys and discovered that they were dilated and that her bladder was not emptying properly.

I was now 24 weeks pregnant (according to the hospital’s dates) but approx. 28 weeks according to mine. Regular scans were recommended in order to measure her kidneys and plot on a centile chart. I was told that when she was born she would either just need antibiotics or in the worst case, dialysis.

I was still not worried or concerned about my baby and continued going for scans. On the 11th August, I went for yet another scan. This time we had the same sonographer as all the other times but this time, there was another lady too, who was demonstrating a new sonography machine. This machine had the technology that meant that the sonographer was able to keep multiple images on the screen at one time rather than flicking backwards and forwards through images. I lay there whilst the two women were talking about the images. Then, the lady who was demonstrating the new machine, laid her hand on my shoulder and apologised for discussing my baby but explained that she used to lecture in cardiology and asked how my pregnancy had been. So I very nonchalantly  reeled off all the things that previous scans had picked up and I was still so flipping unconcerned (oh, those pre Google days).

I returned to the clinic and was told that I needed to see the doctor. Still unconcerned until we were the only people left in the clinic and I started to realise that things were not quite right. Eventually, the doctor was ready for us and we were lead into a room. The first thing I saw were the box of tissues on the table and I knew it was not going to be good news.

The doctor started to talk about heart defects and a lot of it made sense as I loved watching Holby City on TV at the time (and remember, I believed that this baby had Down’s, so the heart defect made perfect sense). It was then that the doctor told me that cysts on the brain, dilated kidneys, bladder problems and heart defects can all be markers of chromosome abnormalities. My partner was very angry that all these markers had not resulted in a earlier diagnosis but I have never been angry about that.

I rang my Mum to let her know about the baby’s heart and even she said to me, “Maybe you’re right about the Down’s syndrome.”

I was transferred to the ante-natal unit to be monitored. I was all hooked up and a midwife came in and told me that she was going to turn the monitor down as there were women on the ward who had lost babies and they didn’t need to hear my baby’s heartbeat.

I noticed that my baby’s heart beat varied so I called a midwife and said that I had no idea the correct range but I was sure that from what I could see, something was wrong. The doctor was called and he agreed that something was wrong.

He said that he wanted me to go to St. Mary’s in Manchester to undergo further tests but they could only get me an appointment on Wednesday (this was the Monday). I had a choice; deliver today but risk having an unnecessary operation or wait until Wednesday and risk delivering a dead baby. I opted for delivery that day.

I now know that when he said an unnecessary operation, he meant that I would have had the option of ending my pregnancy, I now realise that he suspected that there was something seriously wrong with my baby.

I was still blissfully unaware and was excited at the prospect of meeting my baby at 36 weeks (my dates) and at 34 weeks (their dates). So, I was prepped for an emergency caesarean section and insisted that I was awake. I remember “Don’t Look Back in Anger” playing in theatre and asked my partner if we should change her name to Sally, but he wasn’t too keen. I was an avid Oasis fan (still am) and had seen them play live many times.

The team struggled to get my baby out as she was too small and she kept slipping back in. I remember hearing one of the team keep shouting, “More fundal pressure.”

At 3.30pm on the 11th August 2003, Scarlett came into this world screaming. I was quickly given a quick glance of her bright red little face as she was whisked away after I had said a quick, “hello.”

The next thing I knew, I was waking up in a room, as they had administered a general anaesthetic so that they could stitch me up. As I came round, my partner was to my right and a polaroid photograph was on the cabinet to my left. I picked it up and it was obvious to me that Scarlett did indeed have Down’s syndrome and I turned to my partner and said, “Look! I told you that she had Down’s.” He replied, “No way”.

Soon after, Dr Massarano, the loveliest  paediatrician at Tameside Hospital entered. We had seen him when Tilly was a baby so he was familiar to us. I then said to him, “She has Down’s syndrome, doesn’t she?”

He sat down and smiled very sadly and ran his hands over the top of his head and said, “No, no, it is much worse than that.”

He then told me that she had a pretty little face but that my baby had Edward’s syndrome and  was not expected to survive. He said that babies with this condition rarely survive pregnancy, never mind birth, and are not expected to live beyond 12 months. He advised that we spend as much time as possible with her. I could see that this incredibly kind man struggled to give me this devastating news. He handed me a very out of date SOFT UK booklet and left the room.

I was then taken to the ward and started to read the booklet, I had been given. The stories of children who had survived gave me renewed hope and I no longer felt that this diagnosis was the death sentence first described. A midwife on the ward looked on the Internet and printed out some more information on Edwards which was less positive than my booklet.

I was taken up to NICU to see Scarlett and she was a lovely colour and looked quite chubby. I couldn’t hold her as she was quite poorly. It was then explained to me that it was policy not to perform heart surgery on Edwards babies as it was pointless (that was the word used). It  was pointless because even if they fixed her heart defect (which was not that bad) her other organs were too badly affected for a mended heart to make much difference.

The morning after Scarlett’s birth, I went to take a shower with the sole intention of being able to have a good cry after being told that my baby was going to die. I turned the water on and sobbed, big noisy, ugly tears. Another mother heard me and began asking through the door if I was okay but I didn’t answer her and I heard a midwife tell her that my baby was very poorly and led the other woman away.

At no point was I devastated that my baby had Edward’s syndrome- I never grieved for the healthy baby I didn’t have, I was only devastated that she was going to die.

It was at this point that I mentioned to a member of staff that if Scarlett did die, it would be very upsetting if I would have to register her birth after she had died. The ward staff contacted the registry office and a registrar came to the ward in order that I could register Scarlett’s birth. This small act of kindness meant the world to me, I was even able to put her dad’s name on the birth certificate even though we were not married and he was not present at the time of registration. Scarlett was official, it meant that she had her dad’s name and the same name as her siblings.

On the next day, the ward arranged for Scarlett to be baptised, something that was important to her dad, not so much to me, even though, I was the one who went to church each week. They gave us a little broad anglaise piece of material that looked like a christening robe when put on top of her. She looked very beautiful. It was a lovely, peaceful service but with only me and her dad there.

It was a very tough week, I had 2 young children at home who I was very worried about as they were being moved from pillar to post and support from friends and family was not forthcoming. My partner was struggling to cope so I could not spend the time I wanted to with Scarlett. 20 years on, I feel increasingly resentful towards my ex that I was not able to make Scarlett my full priority. I do not recall having any conversations with doctors during the 5 days of Scarlett’s life. One doctor did mention ‘incompatible with life’ and it felt as if we were just waiting for her to die. They did provide me with an expressing machine as I wanted  Scarlett to have some of my milk, but I don’t think that she managed to have any.

When I was given Scarlett’s diagnosis, the task then was letting people know. My plan was to tell a few key people and for them to spread the word so it would prevent me from having to tell my story over and over again. As soon as people found out that Scarlett was not expected to live, they didn’t send cards congratulating us on her birth or buy any gifts. This hurt and 20 years later, it still hurts. A lot.

On the Friday, I went down to see Scarlett and was told to stay with her as she had deteriorated significantly. She looked very different, her colour had changed and she looked quite wizened. The midwife lay Scarlett on my knee and she lay looking up at me. She had never opened her eyes before and she was looking into my eyes and I could see that she had had enough, that her fight was over. I stroked her face and told her that I loved her, that I didn’t mind if she left. I told her that she would always be my baby and that she could go to sleep. She died soon after. She had died on her fifth day.

When I returned to my room a friend had left a ‘With Sympathy’ card and a bouquet of lilies, whose pungent aroma filled the room. To this day, I cannot bear the smell of lilies.

I spent the next two days in a special room with Scarlett. I was able to dress her and take hand and foot prints, these aren’t too clear due to her having rocker bottom feet and clenched hands. I was given the option to bath her but I chose not to. I remember sitting in a chair underneath the window and the sun was shining through, so I pulled the covers away and let the sunshine on her face. I spent those two days rocking and holding her. I just didn’t want to let her go but I knew the longer I stayed with her, the harder it would be to leave her and I had two children at home who needed me too. One of the hardest things I have ever had to do was to leave her behind in that hospital and when they put her in the ground.

In the months after Scarlett’s death, if it hadn’t been for Tilly and Louie, I would not be sitting here writing my story. They  kept me alive in the coming months because I had absolutely no-one to turn to. My partner completely crumbled. Fourteen months later, I was blessed with my Rainbow baby who mended my shattered heart. Amber is now 18 and has made me smile every day.

I still miss Scarlett and think about her every single day but I have been able to move forward and have reached a level of acceptance that I don’t think I would have been able to reach, had she been stillborn or her death unexplained.

After her death, SOFT UK sent me a link list and I corresponded with other parents who had lost their babies to Edwards. Those parents helped me so much in that first year, I could never thank them enough for their support.

Thank you for reading my story, I know that it is lengthy.

Debra Merrington