The Butterfly

As we’ve been posting for Spina Bifida Awareness Week Stephen and I thought we should repost my very first blog from two years ago which was about my journey with Hannah’s diagnoses.

In March 2003 we discovered I was pregnant.  We were really excited we had already a son Adam who was 8 months old. We were looking forward to our two children being really close together and good company for each other as they grew up.  My pregnancy was progressing really well. I was healthy and had gone back to work after my maternity leave with Adam. Life was good and our baby was due on Christmas Eve.  We were really looking forward to our big scan coming up and we decided that we were going to find out the sex of our baby this time. I was just too impatient and had to know.

We were so happy that morning and excited to see our baby and find out if it was a boy or girl. The sonographer took a lot of time doing the scan and was extremely quiet and I can remember thinking she is being very thorough she then said she just needed to nip out for a moment.  I didn’t think anything was wrong at this stage not until a woman entered the room with the sonographer and introduced herself to me as my consultant and my heart sank as I knew there was something wrong. 

She scanned our baby and then informed us that our baby had Spina Bifida and possibly hydrocephalus and that things were not looking good for her.  I can remember thinking that this can’t be happening to me things like this don’t really happen it was all a bad dream.  I could see her mouth moving but I couldn’t hear anything.  Next thing I knew there were other nurses in the room with us and I looked at Stephen and he had turned grey; that’s when I knew it was real.

I had heard of Spina Bifida before but didn’t know what it was or how it would affect our baby.  We were fortunate enough that day that the doctors and consultants who we needed to speak with were there to give us information and tell us what to expect.  We spoke with one doctor who told us that if our baby survived the pregnancy it might only live for seconds, minutes or days and if she did she would be both physically and mentally disabled.  She wouldn’t be able to talk, walk and in his words would be brain damaged.  He advised us that we should have our pregnancy terminated and gave us 24 hours to think it over.  I can remember thinking there is no way on this earth I am giving up on my baby and was worried Stephen wouldn’t have thought the same as me.

The doctor left us alone for a few minutes and we both agreed there and then that we were not giving up on our baby and we were going to cherish whatever moments we were going to be blessed with her and remember them always.

We told the doctor our decision but he still insisted that we think it over and really did try and persuade us to change our minds.

The next morning at 9am Stephen rang the doctor and told him that we were not giving up on our baby and going ahead with our pregnancy.  The remainder of the pregnancy was just full of appointments monitoring everything with the baby and each time they were giving us the most terrible news but we were still not giving up on our baby girl.

I experienced very mixed reactions from people regarding my pregnancy; both of our families were very supportive but what shocked me was my friends that I had been through everything with telling me that I was being selfish and not thinking of Adam and how it was going to affect him; another friend of my mums asked her, in her words, “why did she not get rid of it”.  They couldn’t understand that whatever time, whether it be long or short, we were going to have with our baby was going to be the most precious time of our lives.   I know I couldn’t have lived with myself if I had have given up on her and I now thank God that it was us that he trusted with that decision for our baby and not them.

I got a real strengthening of faith over the next few months and started going to mass and praying more that I probably ever had before.  The nuns prayed for us every day and they had a few special masses for us.  The last mass that was said for us was the weekend before I went into hospital for a C Section to deliver our baby into the world.  During the mass I noticed a beautiful butterfly on the altar and it stayed there all throughout the service. I can remember thinking I have never seen a butterfly in December before as in Ireland this is very rare.  At the end of the mass one of the nuns lifted the butterfly and brought it over to me and placed it in my hands.  Now if you have ever tried to lift a butterfly and carry it across a room and place it in another persons hand it is extremely hard to do.  The butterfly just sat in the palm of my hand and didn’t move, I actually thought it wasn’t real until it started to flutter.  This butterfly has always stayed in my memory and I have always thought there was something very significant about it.

On 10th December 2003 at 10.30am our baby girl Hannah was brought into the world weighing a whopping 8lb 12oz.  She defied everything the doctors had said and would continue to do so.  Stephen had a quick cuddle with her before she was taken away to the neo natal unit.  When I was brought out of theatre I was brought to see Hannah it was very funny she was the biggest and healthiest baby in the neo natal unit filling the incubator with this massive head of brown hair. I knew then and there that she was a fighter and that everything was going to be just right.

I didn’t get to see Hannah again until later that night. I couldn’t settle back on the ward and one of the nurses on the night shift said that if I was able to get out of bed they could get me a wheelchair and take me up to see her.  She didn’t have to tell me that twice I was up and out of bed right away.  When I got to the neo natal unit the doctor  was doing the rounds and he told me yet again how my baby wouldn’t walk, talk or be able to do anything for herself and that we wouldn’t know until she was a year old what damage there was going to be to her brain.  I was petrified as it was nearly midnight and I was sitting here on my own in the hospital with my baby in an incubator and I still couldn’t get to hold her.  The nurse came and brought me back to the ward and gave me a sleeping tablet to help me sleep but it never happened and I couldn’t wait until morning when my Stephen would come and see me.

The next day our little girl was transferred to the Children’s Hospital to have her first of many surgeries and that evening I signed myself out of hospital and went to see my daughter where I finally got to hold her for the very first time.


On Christmas morning we got the best present ever and we were allowed to take our baby girl home from hospital.  The first six months of Hannah’s life were spent in and out of hospital and either myself or her daddy were with her at all times and Adam was never neglected or felt deprived in any way.

Hannah is about to turn 16 years old and she is the most amazing and outgoing girl you could meet.  Don’t get me wrong she is a typical teenager; mood swings and temper tantrums are a daily occurrence in our house.  Hannah did and continues to defy everything that the doctors said she couldn’t do.  She can talk, boy did they get that one wrong, the only problem we have there is getting her to stop!  She sings, dances, writes, reads and stalks celebrities on social media especially Shawn Mendes.

We are all different and unique in our own way.  Some of us are black, some of us are white, some tall, some small, some thin and some not so thin and then there are the Limited Editions who have a very special, uniqueness about them that light up the world.


Published by Fractured Faith Blog

We are Stephen and Fionnuala and this is our story. We live in Northern Ireland, have been married for 17 years and have three kids - Adam, Hannah and Rebecca. We hope that our story will inspire and encourage others. We have walked a rocky road yet here we are today, together and stronger than ever. We are far from perfect and our faith has been battered and bruised. But an untested faith is a pointless faith. Just as a fractured faith is better than none at all. We hope you enjoy the blog.

47 thoughts on “The Butterfly

  1. Amen! This brought tears of joy. Joy that you and your husband were so good and faithful and not cowards, god bless u! And then joy at god’s promise to your baby and now young lady..god’s miracle. xxx

    Liked by 3 people

  2. Beautiful! I always keep a Bible verse on my index card each week for a meditation. I am going to place one on it forever that says, “Remember Hannah.” This will always give me hope when I think there is none. Thank you so much for sharing. God Bless, SR

    Liked by 1 person

    1. That is beautiful I read this to Hannah this morning and she couldn’t believe somebody that doesn’t know her would do that you touched her heart ❣ nothing is impossible with Our God we just have to keep trusting and believing. God Bless 🙏

      Liked by 1 person

      1. Oh, how this touches my heart!!!!!!!!!!! Makes me boo-hoo! 🙂 She sounds like such a wonderful child. Thank you so much for not ending her life, and for giving her the chance to be the wonderful child of God that I am sure she is! God Bless, SR

        Liked by 1 person

  3. Thank you for sharing this. I am stuck with a condition that came up slightly over 3 years ago after a prank gone wrong and has developed into something so debilitating and cost me my job, health, friends etc. Doctors are puzzled and have tried, tested and exhausted everything. I beg God for his mercy everyday to give me my life back. I beg him to heal me. I’m also afraid that no other doctors want to try anymore, but reading this post gave me hope. Doctors are humans too but God is God and he has no limitations. That verse from Corinthians also remind me that this is a time for me to reflect on my past sinful ways and that maybe, God is giving me a chance to have a new heart and mind. Thank you, you have placed a little hope in me to not take my life but to hang in there a bit longer. God Bless your family, your beautiful hearts and kindness. xo

    Liked by 2 people

    1. Thank you for reading and can I ask you to please never give up as I said in that blog each of us have a unique plan and purpose for this life. From all the hurt pain and suffering my family has been through God has used to help others, he will do that for you too. If you ever want to message me privately please email me or send me a private message via Facebook/Twitter/Instagram my email address is

      You are not alone and you actually have the greatest physician of all looking over you.

      God Bless

      Fionnuala ♥️


  4. What a wonderful testimony of our Heavenly Father’s awesome love! Your words, “limited editions” made my heart happy. We had a beautiful granddaughter, Nicole Paige, who lived 37 hours after her birth. She was definitely one of God’s chosen “limited editions” because she brought such joy during her short life. It seemed as if God allowed us to experience all the love we would have spread over a lifetime of loving her into those 37 hours! Some thought it would have been easier to accept a miscarriage than to say goodbye after holding her, but those of us in her family knew we had held an amazing little one, one we would remember when we meet her again to spend eternity in our Father’s loving presence. Thank you for sharing your inspiring words.

    Liked by 2 people

  5. This is beautiful, Finnouala. I am so thankful to hear that neither of you would give up on her! God definitely has a purpose for each and every one of His beautiful creations. My friend’s girl also had a Kiari malformation and has also had to endure multiple surgeries for her bladder, her shunt, etc. and so my heart goes out to you – and to her – for all of it.

    I hesitate to mention her name since she is not mine (at least not full time!), but I have passed your blog on to my friend. Their family has had quite a ride – besides the SB baby, thier youngest had cancer when she was 2. That was near the beginning of our prayer meetings… and that little girl is a tall, spunky grade schooler now!

    Liked by 2 people

  6. You testimony is powerful so I will keep my words short.

    Profound Faith, Devoted Consideration, God’s Grace Granted

    There is nothing better than a miracle story. Kudos to you for letting love lead your way rather than science. Miracles happen when we but open our hearts to the powerful essence of love. I’m so happy for the wealth of blessings your story has brought to your life and I’m happy you have found the way to appreciate them for all that they represent.

    Liked by 2 people

  7. Praise God. Sometimes humanity loses compassion for others. I’m glad you both stuck to your decision. And it definitely awoke you to the real truth about your friends. That part of the story hurt. But I know God has brought you better friends to support you in this next part of your life.
    Hannah you’re the best.

    Liked by 2 people

  8. Your beautifully written post; your incredibly story of faith, hope, and love brought tears to my eyes. I have a granddaughter who was a “limited edition,” though she never took a breath this side of heaven. I am looking forward to the day when I can hold her in my arms and smother her with all the kisses in the world. The grief runs deep (she only been gone 5 months).
    I am certain you treasure all the moments with your Hannah—even the sassy ones! I imagine that because of your experience that you have hope that extends beyond human eyes and have been a testimony of unconditional love to many, many people. You certainly have been to me! Thank you for sharing your personal story.

    Blessings to you and your beautiful Hannah!


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