Lily Bea Kerins

My little Lily

Our life changed forever on April 2^nd 2014. Our beautiful 3^rd daughter was born. We called her Lily. We were to find out very quickly that Lily had been born with Edwards Syndrome. Edwards Syndrome is a life limiting condition. It is not hereditary.  She lived for 53 days and this is her story.

The beginning

I thankfully don’t usually suffer too bad with morning sickness in my pregnancies. I had nausea from week 6 to week 10. I had a small bleed at 12 weeks but thankfully all was ok. My only worry with the pregnancy was getting to the hospital in time when in labour! I had a very fast labour with my 2^nd which resulted in having an unplanned homebirth.

Lily was breech from week 28. I tried everything to turn her but she was happy listening to my heart. I choose to have her turned manually on Monday March 31^st at 37 weeks. It was pain-free, not uncomfortable at all. I told my friends it was like having a massage! That night I had what I presumed were Braxton Hicks. They went away during the day on Tuesday but returned in the early hours of Wednesday morning the 2^nd of April. Again they were not painful but I thought we should head to hospital to get checked out because of what happened with my 2^nd daughter. Unfortunately my waters broke as we were leaving the house. It was a very hairy car ride to Mayo General but we made it with less than 15 minutes to spare. Lily Bea Kerins was born at 6.45am weighing 4lbs 10oz’s.

She cried and was placed on my chest for over an hour. They were not concerned by her size as I make small babies but chose to get her checked in the Special Care Baby Unit (SCBU), just to be sure all was ok. As my other two daughters had also spent some time there, we were not worried. We joked about the fact that they all like to go in there to give their mammy a rest!

At around 10am we made our way down to SCBU. We were told Lily had had two apnoeas and needed to be put on CPAP to help her breathe. They also pointed out her rocker bottom feet and clinched hands. My first reaction was that she had a physical disability and we would be using Western Care services. It was not long before we found out that would have been the easy option.

Her consultant sat us down and said that when they put her little features together with the apnoeas it looked like she might have Edwards Syndrome. When I asked was that like Down syndrome he said yes, in that it is a chromosome disorder but no, in that she had days to live......

Precious time... Olivia and Lily

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For the rest of my life I don’t think I will ever get that moment out of my head. We sat there in shock for a few minutes, then slowly the information seeped in and we fell apart. How could this be happening to us? Why was this happening? He has it wrong. How can she be dying? Our dream of a perfect family was being ripped apart.

Both our families were called in to say their goodbyes as we needed to get Lily to Temple Street, in Dublin, to have tests done. We also had her baptised there in SCBU. At 5pm, after getting myself discharged, we waved goodbye to Lily as she boarded the helicopter, not knowing if she’d still be alive when we got to Dublin. No-one should ever have to say Hello and Goodbye to their new baby in the same day.

Thankfully Lily arrived safe and went into the High Dependency Unit of St. Michael’s B ward. On Thursday the doctors were saying that it might not be Edwards as her organs seemed fine. This of course was good news but it was a double edged sword. IF it was not Edwards, it was some other chromosome disorder, which meant that my husband or myself might be carriers. If we were carriers, then our other two girls might also be carriers. I think, even today, that that Thursday was the toughest day of this whole journey. I wished and wished that she would live and that they had it wrong but if that wish was to come true then it had far reaching consequences for our whole family. However, all the wishing in the world would not change who Lily was. She was unique and special and to be with us for a very short time as on Friday 4^th she was diagnosed with Edwards. The head cardiologist confirmed that Lily had the heart of an Edwards baby with an ASD and a VSD present. Once they were confident with the diagnosis they sent us back to Mayo General on Saturday the 5^th to begin what they called ‘comfort care’.

From Saturday 5^th to Wednesday 16^th of April we tried to get our heads around this disorder and what it entailed. They told us we had a few days with her. They told us she would have episodes of apnoeas. They told us she probably wouldn’t get bigger as her digestive system probably wouldn’t work. They told us she might not go home as she needed high flow oxygen. She proved them all wrong.

They couldn’t tell us how long Lily would live really. Everyday we thanked her for staying with us, for giving us time to get to know her and love her. We planned her funeral. We got family and friends to come and see her to say goodbye. We took hundreds of photos and hours of footage on a camcorder. Every night we kissed her goodbye as if it was the last time we’d see her alive. I would whisper to her to ‘keep breathing’. And every morning she was wide awake waiting for me. Waiting for her cuddle, kisses, a chat and a massage!  We also brought Lily’s sisters in to see her. We felt this was so important for them to see her, to hold her and to form memories with her.

Slowly the idea of going home started to be talked about. A social worker, outreach nurse, a dietician, the palliative team & a Jack & Jill co-ordinator came to see us. To say we were apprehensive was an understatement. We both felt that if Lily had a longer life in SCBU than at home, then, in SCBU was where we would stay. However, as the days passed and we had her 1^st week birthday in the hospital we felt that quality was more important than quantity. We talked to the consultant and the brilliant nurses about what to do when/if she had an episode. We decided, with their professional opinions, that Lily would be given extra oxygen and a little rubbing to stimulate her but nothing else. Lily, so far, had made her own decisions and had beaten the odds so we would let her decide when her time here was over.

Once we felt comfortable that we could cope with what our immediate future held, we left Mayo General on Lily’s 2^nd week birthday. What a special moment it was to get her home and celebrate her birthday with her sisters and extended family...

The Middle

A strange new normal began. We set up Lily’s crib and equipment in the kitchen so she could be very much part of the mayhem. We were blessed with our families and professional support. Our friends rallied together to help us, which we are very grateful for. We were granted home nursing support from Palliative Care and The Jack and Jill Foundation. We used these hours at night so we could get some sleep. We did choose to do one night a week from week 2 to week 6 as Lily was doing so well and I wanted to do the normal new-born mom thing. I felt cheated as I was getting sleep when my friends with new-borns were up doing feeds etc. I soon realised that I was not physically or mentally able to keep going around the clock caring for Lily as well as a 4yr old and a 2yr old and the constant stream of callers.  Our families called almost every day for their cuddle and kisses. We quickly moved from wanting Lily all to ourselves to wanting to show her off. My theory was that I will be talking about this amazing, brave little lady for years to come and I wanted my friends and family to have a picture of a happy baby in their minds. So the revolving door began. Every day we arranged a ‘timetable’ so that people wouldn’t arrive at the same time. Couldn’t ‘timetable’ my family though!! They all just arrived for their daily fix! I felt so proud being able to show off my new-born. She was and will always be my 3^rd pink lady.

For those who know me, they know I have a Mammy Rule Book! Lily, however, made me throw the book out the window! Rules that she broke:

1. Used a dody (soother)
2. Got picked up when still sleeping
3. Being held constantly
4. Making me stay in the house
5. Slowing life down
6. Putting a halt to any plans (I make plans in my sleep!)
7. Rocking Lily to settle her
8. Bought her a swing chair (the devil's invention, rocking is not allowed!!

From day 14 to day 44 Lily was like any other new-born, apart from her equipment of course. She had nasal prongs for oxygen and her NG feeding tube.  She put on weight, she looked for boob, she cried, hated wet or dirty nappies, liked to be held, had favourite positions, liked the dody, loved her massage, enjoyed being sang to, liked to ‘play’ with sisters. The dietician was shocked by how hungry she was. She was drinking 20mls per hour of EBM, by week 6.

One of our favourite memories was when we brought Lily upstairs for story time before bed with her sisters. This was something that I thought we would never get a chance to do at the beginning.

Everyday a professional HSE worker called to check on us, whether that was our outreach nurse, palliative care, Jack and Jill, social work, public health nurse, home help or our amazing GP. Without these people I personally would not have gotten through it. As Lily didn’t need any nursing, they were mostly my counsellor, someone to bounce my fears and worries off, of which there were many. They helped us move through the ‘mourning process’ to the ‘celebrating her life process’. Once the funeral service was discussed and planned, we put it aside and relished in the fact that she wanted to stay with us for as long as she possibly could.

During these good weeks we did many things with Lily, trying our best to make memories and show her how loved she was. Look at our bucket list for the 60 items she achieved. One of our special moments was to bring Lily out to my parent’s house in Cloonee. This is where I grew up and where the girls go on their ‘holidays’! My sisters and their other halves were there also. We all had a special dinner in Lily’s honour and then my uncle and his family came up to meet her. I was anxious that nothing would happen, as we were always waiting for her apnoea alarm to go off. But she behaved brilliantly and we made lovely memories. We thankfully got to visit Cloonee twice but the 2^nd time Lily was suffering with reflux and had an upsetting incident with vomit. Don’t think my mother will ever get that image out of head. 

Here I am at 28 days... amn't I just fine!

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Another special moment was when we ventured out to a 1^st Holy Communion. We were all made so very welcome. I was so proud showing her off and for the day, we forgot about her syndrome and her pipes and just enjoyed being new parents again.

During these 4 weeks we put all our energy into having a birthday cake every Wednesday, floor play with her sisters, photo shoots with and without pipes, trips in the car, reading her stories, kissing and hugging and loving Lily as much as we could. We planted a cherry blossom tree and a princess lily plant in her honour. Life was good. It felt as normal as we could make it. I got used to living in the moment and being house bound, which for me was an adjustment. The outside world became non-existent. Watching TV a distant pastime. ‘Me’ time was something I wished would never return.

The Early Intervention Team called during week 6 because she was doing so well. Mostly discussed how we were doing but informed us of their services if Lily continued to defy the odds. This, I have to admit, I didn’t cope well with. I had been told from day one that Lily had days to live. I had slowly got my head around that. Now I might be looking at long term care. If that was Lily’s plan then I would rise to the challenge but I knew from research that her quality of life would be very poor. I was scared for her and us. Could we cope with 24 hour care? How could I protect Lily from discomfort the bigger she got?  Of course we could cope, but I did panic. I had a counselling session with my outreach nurse and my worries were listened to and empathised with. I had to remind myself that I was not a bad mother. I just did not want Lily to suffer any pain in her life. My husband reassured me that Lily had a plan but she just didn’t want to tell us yet. I know now that he was right. (Don’t tell him I said that!)

Mam gave me the most beautiful pedicure... ever....!

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The End

On Thursday May 15^th Lily began spitting up. On discussion with GP and outreach nurse the next day, we concluded she possibly had reflux due to NG tube. Zoton was prescribed and the suction machine received. On Saturday we had the vomiting down the nose incident in my parent’s house. The spitting and vomiting continued on Sunday which resulted in a lot of suctioning and crying on everyone’s part. That night I rang SCBU for advice and they said to reduce feed to 10mls an hour from 20mls. During the day I had noticed that she wouldn’t take her dody and that saliva was pooling her in mouth. I thought that she might be losing her suck and swallow.

The next day Lily’s NG tube got blocked from the zoton and our outreach nurse was away so we had to venture back to SCBU. This, surprisingly, was not as bad as I thought. When we left with Lily 4 weeks previously I was determined she would not return but a sense of calm came over me as we walked through those doors. I was glad she was there so they could check her over and give us the thumbs up that all was ok. Her consultant examined her and was so proud of her and us as she had put on weight and grown in length.  She looked big in the incubator, even though she was still only 4lbs 14oz’s! He said her suck and swallow was probably gone and her rooting reflex was also gone. He said her system seemed be shutting down and she could be gone by that evening or last another month. This was a blow but I had been prepared for it as I had noticed the little changes myself.  Her tubes were changed quickly and we were home again in an hour.

Love getting cuddles from my mam...

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Lily continued to vomit for the rest of the day so the GP suggested reducing feed down to 5mls an hour and she would call again the next day (Tuesday). It felt like such a small amount going from 20mls to 5mls but her poor body just could no longer tolerate the milk.

Tuesday the 20^th is a day I won’t forget. I woke up in the morning thinking my beautiful baby had bad reflux and went to bed that night knowing that her digestive system had shut down. When the GP and palliative care nurse called at 3pm Lily had become very weak from all the vomiting. It was decided that we stop her feed and give her dioralyte instead. This would be much easier on her system and still keep her hydrated. Our outreach nurse called that evening and I then realised that this was not a temporary plan. She gentle informed me that Lily’s little body was slowly shutting down and that we could have just a few hours. Lily was prescribed Oramorph for any pain she may have and Midazlom to relax her. We knew this day was coming but I don’t think you can ever be prepared for it. My first instinct was to get out of the kitchen we had lived in for 5 weeks and move into the living room. Our families were called and that night was the beginning of the long sleep over!

We decided to get professional photos taken the next day. It was her 7 week birthday. Those photos will give me such comfort for years to come.

There was no doubt that Lily was frail. How can someone so small cope with so much? How long can she survive on just a salt solution? That night at 12 midnight we all gave her a round of applause for lasting 7weeks. We were so proud of her. We lit the candle on her cake and made a wish. It was very special and we were very proud parents. However we didn’t realise that we would light that same candle two more times that day! Lily perked up once she had a good night sleep. She had a good colour and was doing her normal reflexes. We thanked her for waiting until the morning to say goodbye to her sisters.

The family rallied around and a few friends called to say goodbye on Wednesday but Lily had different plans. She was weak but going nowhere. She had her professional support people shocked. Thursday was the same with more tears and goodbyes but she still woke up full of frolic on Friday morning. Thinking back now we all agree them last few days were probably her most wakeful of her 53 days. It was as if she was giving us as much precious memories as possible.

The saying is that people are often waiting for something before they pass. But we couldn’t figure out what she was waiting for. We were all here. We had said our goodbyes again and again. We were ready, to a point, to let her go.  My sister decided that she was waiting to wear the Mayo jersey and bright pink lipstick! But even after achieving both those things she was happy to stay with us for another two days.

Hugs and kisses are a plentiful...

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On Friday evening Lily had her 1^st apnoea attack. My friend had come to say goodbye, again, and Lily held her breath a little longer than she should have. She went off colour but came around quickly. It made what was about to happen very real. The end had begun. We waited all that night for another one but none came. Again she woke on Saturday bright eyed and ready to ‘talk’ to anyone who would listen. Everyone continued to get their fix of hugs and kisses. The crib had become redundant since Tuesday. We were joking that that was her plan all along, to be held 24 hours a day.

Saturday evening she had another apnoea attack and that was followed by more and more as the night went on. I would put her onto my chest so that everyone didn’t have to see her change colour. I could also gently pat her back to remind her to breathe. The oxygen was turned up to its highest now. We decided, after saying goodbye again and crying until we were dehydrated, that if she was going to slip away she should go listening to her granddad singing her a song. He sang Bright Blue Eyes, the same song he sang at our wedding. I then sang her a song as well, willing her to go if she wanted to, as we were all her with her. At about 3am we decided it was too hard to keep watching the apnoea’s so we decided to go to sleep where we were and if she went in her sleep it would be very peaceful. I lay her on my chest, in her favourite position, and lay down on the couch. The palliative care nurse promised to wake us if she passed.

I was rudely woken on Sunday the 25^th of May by Lily hitting me on the head with her fist. My dad and husband had been watching her and said it was very funny. As you can imagine we could not believe that she had survived the night, let alone be full of frolic again. She really was the most inspiring and amazing little lady. It didn’t take long though for the apnoea’s to start again. At 11 am she had her first of the day. Today though they were different and I knew there was no way she could continue to cope. As the day progressed, they became longer and closer together, sometimes lasting 10 to 15 minutes.

Our families were with us all day. I found her apnoeas hard so I didn’t pass her over to anyone, except my husband, all day. When she started one I would put her into her favourite position on my chest. It was a long day and we were emotionally drained as well as physically. I can only imagine how little Lily felt. She was such a small person, to have to suffer these things. But we were reassured through this whole process that she would not be in any pain. She was still receiving her Oramorph every 4 hours. This gave us comfort knowing for definite that she would not be in pain.

Our GP rang to say she would call down at 9pm. When she arrived, ‘the men’ of the family had gone out to cut the lawn. Did you know it takes six men to cut one lawn! At 9.15pm Lily had a big apnoea attack. Once it hit the 10 minute mark, my GP said we should call the men in. She checked her heart and it was at 60 beats per minute. They all ran in, smelling of cut grass and sat down in silence. Lily again came around. She looked around the room, gave the doctor a little wave, to the doctor’s surprise, and then slowly drifted back into her last one. I, at this stage, was willing her to just go, to just slip away. I told her it was ok to go and to watch over us always. At 10pm our GP listened to her heart. It had stopped beating.

I had been told in SCBU, 7 and a half weeks earlier, that Lily would go when I was ready. I thought it was just something the nurses say but that Sunday night I was ready. I was ready for her sake. I wanted her to not struggle any longer. I felt her body could do no more. She had surpassed all expectations and we were so proud of the fight she put in. She had given us the luxury of time.

The next few days went as planned. That is something that has helped me cope so far. We had been given time by Lily to prepare the perfect send off. We asked friends and family to call and say their goodbyes to Lily. On Tuesday the 27^th May we had a private service in our home. A family priest made a beautiful job of Lily’s farewell. We played songs and said prayers and to finish, we all went out to Lily’s cherry blossom tree and released a white balloon each. 17 balloons went up into the air and we were overwhelmed by emotion. My 4 yr old said Lily could play with them all when they got up to her. Such a simple sentence tore me apart and gave me peace at the same time. Such a lovely thought to end the service.  We then placed her into her new bed, a comfy wicker basket.

Hold me tight mam...

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On the Wednesday, my husband and I travelled to Cork to have her cremated. A quick, quiet and very difficult ceremony. We returned on Thursday with her remains. My husband and I scattered her ashes out the back of our house, where her cherry blossom tree is and where our girls play. Oh what a lovely feeling to think that she will now play freely with them and I can look out at her every day. We also scattered some ashes in at my parent’s house. They have made a garden of remembrance for her, with beautiful Lily flowers. We buried the remaining ashes in our local cemetery.    

No words can explain how we feel now. I know that we packed in as many memories as we possibly could. I know Lily enjoyed herself and I know no other little lady was and is loved so much. I have no regrets about what we did over the last few months. But I do not get much comfort out of this yet. I want her here. I want to watch her grow up, go to school, have a life.

She has left a lasting impression. She has made our families closer and has been an inspiration to us and to people who have never met us. I believe she knew she was coming for a short time and choose us to spend that time with us. For that I will be eternally grateful.

I wish Lily could have been born healthy but that was not her story. I long for her to be here with us but that was not her story. Her story was to make maximum impact in minimum time. We showered her in love and she returned that love by staying with us for 53 glorious and precious days. As our wonderful priest said ‘she knew nothing but love’

We thank you all for your continued support. Without our families and friends, we would not be getting through it. I am told everyone experiences grief differently. I certainly feel like I’m losing my mind at times. I feel like I should be more upset but then I remind myself that I was grieving for Lily from the day she was born. I am angry that our beautiful daughter had this syndrome but then I remind myself that ‘Our Lily’ would not have been Lily without it. I am either in the denial or acceptance stage now and I know I will have hard days and easier days. I will learn to live with what has happened but never except it. I can only hope that she continues to gives me the strength I need to move on. I am so happy that she chose us and believed we could cope with this. I am grateful that her sisters have concrete memories of her and that our 2^nd daughter became ‘a big sister’. Finally, I feel blessed to believe that Lily is with me every day, that she is being well looked after in Heaven and that I will never be alone again. I feel her everyday lying on my chest in her favourite position. Believing in this is all I have left of her.

Lily will always be counted, never forgotten and eternally loved. Fly high little one xxx

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TRISOMY 18 or EDWARD's SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage before birth, but, quite contrary to recent reporting, studies have found that the average duration of survival for children who lived until birth with Trisomy 18 was 14.5 days; with 39% of babies surviving for more than a month, while 8.4% survived for more than a year.

Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111

Links   Lily Bea Kerins Website Trisomy Help http://www.trisomyhelp.org/ Soft Ireland