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

Fionn’s Story

Fionn’s Story

By Moya Verling Power

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Tom and I were a year married in October 2012 when we found out we were expecting our first baby for June 2013; we sailed through our 12 week scan, excited to see movement and a heartbeat and it was without doubt one of the happiest and exciting times of our lives. We excitedly planned for the summer of 2013 and what it would bring, welcoming our bundle of joy into our new home. We skipped into the 20 week scan not giving it a second thought, and looking forward to seeing baby again, but nothing could prepare us for what was ahead.  I kept a blog of our journey with our little boy while he was safe inside. While keeping the diary was a therapy for myself, it was also a way of keeping family and friends up to date with what was happening, and I hoped it might offer support to others who are facing a similar journey. Here is an edited version, but you can read our full story at https://fionnsjourney.blogspot.com/
25th January – The day our lives changed forever
I suppose the reality is our lives changed forever on 12th October 2012 when we found out that we were having a little baby – a lifetime souvenir from our amazing holiday in Croatia! The weeks flew by and after skipping into the 20 week scan on 25th January, we watched the movement of our baby on the screen while the midwife measured legs and arms and all the bits. Out of nowhere she held my arm and said that she needed to tell us something that we weren’t going to want to hear – she could see some fluid around the brain and wanted to get a second opinion. Tears started flowing – we knew the news wasn’t good, but we didn’t want to lose hope for a second. The nurse came back, with the doctor and when our own doctor was called to come see us immediately, I knew things were serious.
The doctor advised us to go to Dublin for a second opinion, but gave us his mobile to text/ring any time of the day or night that we had questions. He told us not to plan much for the weekend and to hold each other and cry; it was a grieving process. His kindness, care and compassion were very comforting for us.
That was at 4.45pm on a Friday evening and the weekend that followed was the longest of my life. I don’t know how we made it through, but I do know it was only with huge support from our friends and family. Having woken up on Saturday morning feeling like I had been rolled over by a bus, I decided to take a leaf out of Marian Keyes’ ‘Bake yourself happy’ book, where  baking helped her through her tough days of depression. So I set off for a supermarket in the quiet village of Cappoquin where I knew nobody would know me. I’m not really sure how I got myself dressed and out the door, but it was the first step in a long hard journey, faced with the unknown and feeling so very fragile.
That afternoon there was a raft of smells; profiteroles, chocolate lava cake, flap jacks and many more have followed since. I found the baking therapeutic through the swollen eyes; weighing and measuring and keeping a careful eye took my focus off the real world for even a few moments. My husband joked about the impact on his waist line because I had no interest in actually eating the cakes – through all the heartache we always managed a joke and a smile.
The rest of the weekend is pretty much a blur, lots of unanswered calls, messaged of support and friends and family swarming around us to keep us going.  Monday came and I waited for the phone to ring to confirm our appointment in Dublin. When I didn’t hear anything by 2pm, I texted our doctor to check if he had heard anything. He replied with a text and told us to “stay strong” – those words have stuck with me since.
29th January
I somehow managed to get myself together to go into a Pilates class that morning and found it very beneficial to let myself be brought through the breathing and exercises. While in a friend’s house afterwards, the phone finally rang to confirm an appointment in Holles St the following morning – the relief was immense.
We journeyed to Holles St the following morning, both of us holding onto a glimmer of hope that things might not be as they seemed. It felt like every candle in the country was lit for us and we got streams of messages to say “thinking of you this morning” – it was all people could say and the support was comforting.
We were brought in to see Dr McParland; he and the team in Holles St were fantastic. Having taken a few scans, he sat down with us to confirm that there were serious development issues, cleft lip, brain underdeveloped, fluid on the brain, baby very small and a deviated heart. Putting all those pieces together he believed our little baby had Trisomy 13, otherwise known as Patau’s Syndrome. He couldn’t tell us if we would go full term or go early – the only outlook was that if we did go full term, it was likely our baby would only live for minutes or hours, possibly days at the most – it was the hardest thing to hear.
He then told us to think about the amniocentesis test, which would test the fluid in the womb to confirm if it was Trisomy 13. We didn’t need time to think about it; we knew the risks associated with the test, but we needed to find out for definite what was wrong with our baby. Turning my head away and holding Tom’s hand for dear life, they took a sample of the fluid from the womb; a strange, slightly painful sensation. It proved a bit of a challenge as our active baby moved about, protecting his territory; it was as if he knew what they were at, disturbing his happy little world in my womb.
4th  February
I took some time off work, as emotions were running high, and I just didn’t trust myself to keep it together. We had been invited to a friend’s wedding the Friday after we got the results and although we couldn’t face the full day of celebrations, we did manage to pull ourselves together and make an appearance at the afters – and we were glad we did. We met lots of friends and it felt good to be out in public facing the real world – we had a long journey ahead of us.
We waited for the results, hoping against all hope that something might change, but the doctor rang us at 7.15pm on Monday evening to confirm our baby had Patau’s Syndrome and that we were having a little boy: our little farmer. We had picked the name Fionn for a boy on the journey back from Dublin – calling him after Fionn Mac Cumhaill, a mythical hunter-warrior of Irish mythology.
12th Feb
So, life began to tick along. There were many bumps on the way, such as the massive mistake of going into Mothercare to pick up a dreamgeni pillow. It was like bringing a child into a sweet shop and telling them that they are allergic to sugar. Of course, near the till were strategically placed babygros. I decided to be organised and pick one up in case it was needed in the coming weeks. I was amazed to find out that not only did they have new born sizes, but also “tiny baby” and “early baby” for a mere 5lb baby. I picked up a starter set, amazed at my ability to face reality while holding it together – but as soon as I got into the car, the floods of tears I’d become so accustomed to started flowing; I would not be buying other clothes for our little boy and our little Fionn was going to miss out on so much. Our hearts were breaking and the “why us?” depression set in.
After 10 days of wallowing and baking any treat I could think of at home, I braved going back to work – it was the best thing I could have done. It totally took my mind off things and life in a strange way seemed to be back to normal. It was like I was in a bubble for a few hours, but the reality was I was waiting for that bubble to burst; hearing a song on the radio, a request for a little one’s birthday, news that friends had a baby, people asking if you are going out for the weekend etc. I could not get over how fragile I felt, as a strong, confident, outgoing person – reduced to having to second guess every minute of life.
But we were getting through it, together. Tom was my rock, and even in our darkest hours he still found ways to make me laugh. This tragedy and massive test of the two of us displayed the strength of our relationship and our love; and continues to strengthen every day.
4th March
I decided to channel some energy into a to-do list, which I compiled from all the wonderful advice from the mums on A Little Lifetime Foundation. I felt lucky that we had this time to plan as many memories as we could with/for Fionn. It was an important way to feel constructive in a situation that we had no control over.
Below is advice from one of the mums on A Little Lifetime Foundation, it summed up how I was feeling.
“I won’t lie and pretend it was easy, but it was somewhat therapeutic to be organising things for him, made me feel a little less cheated because I should have been organising cots, Moses baskets etc. Honestly, there is no right or wrong.  The only advice I can really give is that you will not regret anything you do but you will regret the things you don’t do.” 
For the full list of suggestions, I received see: https://fionnsjourney.blogspot.com/2013/03/march-4th-to-do-list.html
19th March
Nearly two months since we got the news, it almost felt like the initial grieving shock had passed and we were living in limbo, unsure of what lay ahead, but just taking each day as it came.
We were trying to stay positive because Fionn was still growing, but it got a bit harder when I was more obviously pregnant, with people more likely to ask about the bump. But I focused on preparing for Fionn, however he was going to arrive: I got some outfits, my wonderful aunt crocheted two blankets for him, I managed to track down two lovely Friesian heifer teddies (for the farmer!) and I got the plaster cast sets. It was tiring though, the emotions and keeping it together, on top of normal pregnancy tiredness. Some days it hit you like a ton of bricks – the devastation, the unfairness, the fear of what was ahead, the loss, the pain and the heartbreak. Why? Why? Why?
12th April
Although it felt like we had known our news for a lifetime, the weeks were really flying by and it wouldn’t be long before I’d be finishing up for maternity leave. We never thought we would get this far, but Fionn was proving the doctors wrong, and Tom and I were proving to be strong enough to cope with it so far!
I was feeling a lot more positive. I was not naive enough to say that we were over the worst because I knew the hardest part of this journey was still ahead, but it felt like we had come to terms with the news. It was easier to talk to people about Fionn and the trisomy diagnosis, Fionn’s to do list was almost complete and my attitude had changed from wishing it would all be over to willing Fionn on to keep going so that we could meet him. I felt stronger and able to handle the news and the circumstance – Fionn was still very much alive and growing and I wanted us to enjoy every day we had of having him with us. It was particularly hard when I saw other babies and thought about how excited we should be now that we were in single digit countdown, but I was focusing on Fionn and felt we had the strength to keep going while he was safe inside me.
18th April
I just couldn’t seem to lift the cloud that was weighing on me all week. The reality of the 32nd week and the closer it was to the inevitable seemed to be kicking in. The doctor wanted us to start thinking about our options if Fionn decided to stay put full-term. They are such tough decisions to make; I kept hoping that Fionn might make these decisions for us. He was only measuring about 27/28 weeks for the 32 weeks, but still fighting his cause. One of my wonderful friends sent me a quote that I thought was worth sharing. Written on a rock on Valentia Island – Fionn MacCumhaill’s motto:  “Truth in our hearts, strength in our hands and deeds according to our word.”
27th April
I went to bed Friday night realising there had been very little movement since Thursday. Fionn was still measuring small, so I was not used to feeling a lot of kicks, but he would always let me know that he was there in the evenings when sitting on the couch or when I’d be lying in bed. There was nothing Friday evening, Friday night or Saturday morning. Having tried the glass of iced water “down the hatch” and still no movement I began to think of my options – was I being paranoid and jumping to conclusions? I then remembered that my doctor had a rare Saturday morning clinic, so I made an appointment – I just couldn’t face the weekend worrying. I can’t even remember what was going through my mind, even wondering should I bring my hospital bag, which was packed for the second time that week. It was the most surreal situation to be in.
All was fine, however, his heart still thumping away. The doctor was great and answered a lot of our questions about how Fionn might arrive into the world- so many ifs, buts and maybes – but the reality I feel was with the kicks getting lighter and lighter, Fionn might end up making the decision for us.
1st May
It had been 14 long weeks since we got the news: 14 weeks with our little man safe inside me, 14 weeks of explanations, 14 weeks of fear, 14 weeks of hope, 14 weeks of heartbreak, but the most important 14 weeks getting to know our little Fionn, when we found out his little heart had stopped beating.
I was in for my Wednesday scan; but once I lay down and the screen went on, in a split second I knew the way the wand hovered over me that it wasn’t good news. After about 10 seconds I said, “He’s gone – isn’t he?” to which the doctor simply replied, “He is, I’m so sorry, the poor fella.” Those words meant so much to me, the compassion in his voice, the acknowledgment of our little boy and the sorrow he meant was so real.
As this was just a routine check, Tom was at home on the farm; I was working five minutes from the clinic, and we were living 45 minutes away, so it was pointless for him to be traipsing up every Wednesday for the five minutes that I was in and out for the scan. I do not know how I got myself home; strangely enough my first reaction was should I go back to work to close down my computer and finish what I was working on?  I cried all the way out of the clinic, oblivious to the people walking towards me, and rang Tom in the car and simply said, “He’s gone.” I also rang the family and although we had been waiting for this news, it was still such a shock to everyone – the heartbreak was real this time, after grieving for 14 weeks, his time had come, his fight was found and we were so proud of our courageous little man.  He taught us more about love, laughter, life and friendship than he will ever know.
2nd May
So, the time had come to meet our little man. We had his two outfits picked, his two Friesian heifer teddies ready, two crocheted blankets, his bath wash smell picked and packed, talc bought, a blanket with his name for us to hold onto – anything that could hold a memory for us.
People’s kindness overwhelmed us. My mum ordered a blanket from a local shop and the lady had Fionn’s name embroidered on it and wouldn’t accept any payment for it. My sister-in-law wanted us to give Fionn something belonging to my nephew Joe so that he had something from his big cousin, but as his clothes were all too big, her mum made him a special little jacket. He also had two wonderful blankets crocheted from my wonderful Auntie T and a special Jellycat teddy from Auntie C.
As we prepared to head to the hospital, I felt at peace, and an overwhelming sense of relief. Relief for Fionn that he wouldn’t suffer, relief that we wouldn’t have to make any decisions to impact his quality of life, relief that we didn’t have to decide how he would arrive into the world, relief that he had made his own decisions and relief that we could feel at peace knowing we did everything we could to keep him as safe as possible for as long as we could. We acknowledged our little boy, our friends and family all know and talk openly about him and I have no doubt that this little boy who has taught us and so many of our friends and family so much about life will live long in the hearts and minds of those around us.
8th May
There are so many memories and emotions, so I’m sharing my standout moments that I want to remember, the moments I know I will never forget because they were so hard and the moments I never want to forget because they are so precious
  • When Fionn was placed into my arms, although he was sleeping, I never felt such love for a little person. My heart broke for him – for all that he would miss out on in life and for the shattered hopes and dreams we had for our little boy.
  • The nurses were amazing. I’d never have made it through this ordeal without them – their energy, enthusiasm and love for their job was just unbelievable. The love they showed to Fionn and the dignity with which they treated him with was so comforting. He wasn’t a sleeping baby to them; he was very much a little man who was much loved.
  • Leaving the hospital was a heart-breaking experience- it should have been such a joyous occasion, not the heartbreak we felt walking out with a Moses basket and a blanket covering our little boy.
  • The drive home; relief at getting out of the hospital, glad to be bringing Fionn with us, but heartbreak at what lay ahead.
  • Waking up Sunday morning to see the beautiful Moses basket and our little angel in it, so thankful to the charity Féileacáin for their “cuddle” cot.
  • Bringing Fionn into bed for a cuddle on Sunday morning. Tom came into the room and looked into the basket and got a shock when he saw the empty basket, not realising I’d brought him into bed.
  • The three of us sharing precious bedtime cuddles as a family on Sunday night.
  • Dressing Fionn for his final farewell.
  • Writing a letter to our little boy to put into the coffin.
  • Closing the coffin.
  • Our little family driving to graveyard. I was in the back with Fionn and his little white coffin and Tom drove – we wanted it to be just the three of us in the car for the final journey.
  • The memory of watching Tom place the coffin in the grave will stay with me forever.
  • Realising the true meaning of “silence is deafening” – the house was so quiet when everyone left. When we went to bed we missed the little whir of the cuddle cot that was keeping Fionn comfortable.
  • Falling asleep with Fionn’s blanket the night we said goodbye. We had two blankets: we kept one that he had been wrapped in and gave him a new one. My aunt made these blankets for him, a gift I was so thankful for.
  • The emptiness of the house the morning after we said goodbye to Fionn. Although he was sleeping, his presence was so real in the house.
  • Washing Fionn’s clothes. We didn’t want to wash them to have his smell, but they had to be washed. We have two outfits that he wore that we will keep forever.
  • Visiting his grave for the first time. The clay marked out such a small space
  • Listening to the pounding rain at night and thinking of our little man – hoping he was cosy in his bed.
This little man has taught us so much about life and about each other. We have shared the happiest and saddest moments of our life with him and we live in hope and trust that we will meet him again someday.
We are now grateful to have our own personal angel watching over us. Fionn’s name is spoken every day in our house, by his three little sisters and his little brother. Every holiday we go on, every day trip we do – he is always part of it. Every rainbow that shines, every family picture that is drawn, he is part of it. The kids’ friends even talk about him as their older brother, and he is very much a part of our family. He just lives in the clouds – and for now they accept that. They know their big brother will be watching over them and guiding them through life with us.