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

LilyMay’s Story   


LilyMay’s Story      

By Alma and Chris Stanley


LilyMay was born 4lb 4ozs on the 7th May 2008 (the same day as her sister Jane’s fifth birthday) by a section at 39 weeks. We had been waiting for this day for nine months. It had been a very hard nine months, as at 20 weeks into the pregnancy, during a routine scan, our little girl was diagnosed with Edwards’ Syndrome. 

As I went in for a routine scan at 20 weeks, I did not expect our world to be turned upside down so quickly. I expected to see our baby on the screen and to be told everything is perfect, especially after having two previous healthy pregnancies.  But I got a gut feeling something was wrong as the scan was taking too long.  I can still see the expression on the nurse’s face that was scanning me. My gut feeling got stronger. I was afraid to ask if something was wrong. So I just asked the question, “What’s wrong?” 

The nurse explained that she had a few concerns about what she saw on the scan. She could see a build-up of fluid around the kidneys, the shape of the head was strawberry and she had concerns regarding the valves into the heart. Also, the baby’s size was small for that number of weeks in the pregnancy. I remember thinking this is not good. The phone call to Chris after having the scan was the hardest thing I’ve ever had to do. I remember feeling numb and sick as I walked down to the appointments clinic to see could I see my sister, who I knew happened to have an out- patient appointment around this time.  As I opened the door, my face said it all. My sister knew something was wrong. I could barely breathe as I tried to explain what I had been told. Within seconds my phone rang in my bag. It was Dr Maura Milner, our gynaecologist, who wanted me to sit down and talk about the scan. 

An appointment was made to come back into the Lourdes Hospital the following morning to have another scan and to have a second opinion by a gynaecologist consultant.  We were told not to Google anything, to wait until the morning and get a second opinion. So we did. That evening we were in shock, our heads couldn’t take this in. We were hoping the answer would be different in the morning. We were hoping the machine was wrong. 

Unfortunately the following morning, within seconds of being scanned, there was an agreed opinion made as to the diagnosis of Edwards’ Syndrome. This diagnosis was later confirmed by an amniocentesis, which was done in the Rotunda Hospital in Dublin two days later. 

The following weeks became harder and harder. I was scanned every fortnight by the same nurse, Bernie, who was the nurse who scanned me at the beginning. It was suggested by my gynaecologist that Bernie was to do all my forthcoming scans and all I can say is thank you for suggesting that as Bernie was amazing. We grew to get to know my baby together. It was lovely to be able to be scanned by the same person instead of having to repeat myself every time I attended for a scan to a different person. The feeling of knowing LilyMay was safe and content and a little fighter kept me going. 


As the weeks went by, we grew to get to know our baby inside. Every week was a blessing. Our baby was a fighter and in a safe place as the unknown was out of our control. 


Finally the time had come 37 weeks into our pregnancy and after visiting my gynaecologist, the decision was made to have a section at 39 weeks. The date we were given was the 7th of May. This day was special as our other daughter Jane had been born on that day five years previous in the Lourdes hospital also. 

The 7th of May had arrived. We had waited for this day for weeks. We were finally going to meet our little girl. Our emotions were running very high that morning as we said goodbye to our other two children at home, not knowing what to expect. 


The first sign of a little hope was when we met Dr Thomas, who was the paediatrician. He reassured us that LilyMay would be born alive. Our emotion were relief for the first time. We had waited so long to see our little girl. Everything had gone through our heads, good and bad. Our wish was that we would have time with our little girl, to get her home and let her meet her family. 

At 9.30am our baby girl LilyMay arrived with a loud cry. Tears of joy ran down our faces as we kissed our LilyMay. Within seconds the teams started to work looking after her. One thing we didn’t want was for our little girl to be on her own. So it was decided her dad Chris would go with her and standing close by watching her. 

Our wish and plan after LilyMay was born was to get her home and make her a special part of our family. That was so important to us and we knew time was so precious. We remember panicking in the hospital wondering how would we feed her? The responsibility of looking after such a sick baby was overwhelming. I eventually asked one of the nurses would she mind sitting down in front of me and talking me through doing the tube feeding, as the sooner we could manage it, the sooner we could get her home. 

Time had come to take our baby home.  We knew this was going to be tough. We had been through a few apnoea attacks where LilyMay would stop breathing for a minute at a time. The nursing staff talked us through what to do if this happened. 

Nervousness and excitement were setting in as we walked out to the car, strapping our baby in and holding our breaths. Was this really happening? We were getting her home. Not sure for how long. 

I remember looking out into the back garden and it was so beautiful; since we had been in hospital, everything just came alive and the colour was beautiful, just like our little girl. Her sister Jane and brother Tom were so excited. They wanted to show their baby sister their bedrooms and where she would be sleeping. They wanted everyone to see her. Their baby sister. 

Turn taking in doing her feeds worked.  Chris was great. He was so calm and at ease holding and feeding her. We were very lucky as The Jack and Jill Foundation and S.O.F.T Ireland were on our door step straight away with advice and support. 

LilyMay had to be tube fed because she couldn’t swallow. She only started using a soother in her second week. I will always remember the words Jane used when she saw her with her pink soother; “Now she’s like me”, as Jane still had her soother at the time. 

One Wednesday 28th of May it was Chris’s birthday. We all stood in the kitchen and sang Happy Birthday and the kids blew out the candles. LilyMay cried through the song as if she wanted to sing as well. Our Jack and Jill nurse arrived at 8pm. We ran through LilyMay’s routine for during the night. Shortly after her arriving, Lily May had an apnoea attack, which were becoming more frequent over the previous week. They would last for 15 minutes at a time in which she would go limp, stop breathing and go blue around the lips. At first they were terrifying, but we got used to dealing with them as time went by. LilyMay would be so weak afterwards. I always remember that. That was hard to deal with. 


During the night, Lily May had an apnoea attack every hour, which would last for 15 minutes each. Our nurse came up to our bedroom, knocked on our door and came in with LilyMay at 5am in the morning to let us know about her night. She popped LilyMay into the bed between us. I can still remember the limpness of her body. I did not get a good feeling about this so I asked Chris to try and work from home the next day as I didn’t want to be alone. Chris headed off to Dublin to bring work home at 5.30am. I got up and dressed as staying in bed I felt so helpless. 

Even if I started making the kids’ lunches, I felt I was doing something. Just before 8am, I remember the nurses saying to me, “Mum she’s looking for a cuddle”, so I took hold of her in my arms and gave her a cuddle. Chris got back at 8.30am. In the meantime, LilyMay had another apnoea attack. This one she didn’t come out of and passed away in our arms at 8.50am, at the age of three weeks old. I feel she waited for her dad to get home so we all could be together as she passed away. 

I thank Patrick and Pauline Farrelly of S.O.F.T Ireland every day for the support they gave us from early in our diagnosis and afterwards when we got LilyMay home. I am so glad I made that phone call to S.O.F.T Ireland. Patrick arrived over to meet us the night we made that call looking for support. The voluntary organisation, which works with families of children born with Edwards’ Syndrome (Trisomy 18) and Patau’s Syndrome (Trisomy 13), provides support at pre-natal diagnosis, during the child’s life and after its passing. I always remember Pauline saying to me when we met, “Alma I hope you get the time we got with Patrick (Jnr), it means so much.” I now know what she meant. Our gynaecologist Dr Maura Milner, Dr Thomas, the nurses in special care (Siobhan and Maura) and the nurses who looked after us when LilyMay arrived. The respite nurses we met through both S.O.F.T and The Jack and Jill Foundation. Only for them; they were amazing. 

The saying “life goes on” is so true. Jane and Tom need their mum and dad and we need them too. LilyMay will always be a part of our home. Shortly after she passed away, we captured time by getting an artist to make us a frame for our hall showing our three babies: Jane’s and Tom’s hand prints in clay with LilyMay’s tiny feet in the middle, along with their names and ages underneath. It is our pride and joy.  In 2011, the Stanley family were delighted to announce the safe arrival of Adam, their Rainbow Baby. To this day, when asked how many children have you, we will always say we have four children, no matter what.