Monday 19 January 2015

Alice's story

I've been writing this post in my head for weeks now. I feel compelled to write this, even though I am not a good writer (I'm used to telling stories through my photography). Who knows, maybe this will help someone else as well as helping me. Here goes...{apologies in advance, it's a long one}.

On the 20th of November I gave birth to our gorgeous girl Alice Rose Frances Tobin. In getting to this point we had been trying to conceive for a year, and we were delighted when we found out last March that we were pregnant. I had a wonderful pregnancy and loved every minute of it. I hope Alice felt that love. We are so glad we found out that we were having a girl, as it helped us to have a lovely bond with her even before she was born.

So, the time came to meet our baby. Everything was going well until the last 30 minutes of our 30 hour labour. We don't know quite what went wrong, and we are in the process of investigating this with the hospital, but in short at some point during the labour Alice didn't get enough oxygen. When she eventually did come out she, wasn't able to breathe. The team were quick to respond and she was immediately transferred upstairs to the Trevor Mann Baby Unit. Alice was put on ventilation, and a cooling pad to reduce her temperature for 72 hours to give her a chance of recovery. Apparently the lack of oxygen had caused Hypoxic Ischemic Encephalopathy or HIE for short.

At first I didn't really grasp the severity of the situation. I was in shock and thinking positively (like I always try to), and that night I went to sleep thinking I'd be happy to learn sign language in case Alice's brain damage meant she couldn't hear. Dave on the other hand had seen a lot more of Alice's trauma immediately after birth and had understood what the consultant had said about the severity of the situation. I am so grateful to him for letting me grasp the truth at my own pace. About 8 hours after Alice was born I was wheeled up in my recovery bed to the 14th floor where I could see her properly for the first time. I will never forget those moments and how responsive she was that first evening.

The consultant talked to us on the second day and went over again how Alice was doing, and how her first night in ICU went. The lack of oxygen had caused her brain to swell with water, and was extremely likely that there was irreparable damage. Poor Alice was having regular seizures too, we could see it on the trace (she had plugs in her head to get these readings). The gravity of the situation hit home, and we realised quite quickly that we would have to let Alice go. This was the Friday, and my mum and sister arrived just after the consultant left having flown over from Dublin at 8am. It was great to have our close family with us throughout. It was agreed that we would wait until the Monday to have a final MRI scan to confirm the damage and see whether the cooling had helped. This meant we had a few lovely days with Alice before any decisions had to be made.

I have a lot more to write about the support we had, how Dave and I managed those five days and about getting to know Alice herself. However, as this is long enough already I will save those up for another post.

Day five was the hardest day. We were waiting for the MRI results from a consultant in London, so that morning we spent as much time with Alice as we could. We replaced her white bonnet with a lovely pink one that was sent to us from my mum's friend. She looked so beautiful in it - pink was definitely her colour. We washed her hair and noticed that it was slightly blond - possibly even 'strawberry blonde'! Every discovery and moment with her was a gift, a gift some aren't lucky enough to enjoy. We will treasure everything she gave us.

At 2pm the results came back and we had a chat with our consultant. The extent of the damage was as we feared, the part of the brain that controls breathing would not be able to function, and there was no way she would ever be able to breathe unassisted. We couldn't trap Alice in a cage, so we had to make the difficult decision to take her off life support. We knew this was coming. We had prepared for this day and this decision. We told all of our family who were with us, and they got some time with Alice to say goodbye.

Alice, Dave, her nurse and I all went into a private family room with a double bed. The nurse took Alice's ventilator tube out of her mouth and we got to see her face without any medical equipment for the first time. She was beautiful, and there was not a mark on her perfect little cheeks. We had three and a half hours with her before she passed. We talked to her, told her how much we loved her, thanked her for choosing us as parents. We told her it was time to go, to 'Fly little bird'. It was her nurse who called her a 'bird' and it really stuck with us. We call her 'Ali-bird' now. We called in all the angels, family and friends who have gone before us to come and welcome her home.

Eventually she let go. We were so proud of her at that moment, but equally devastated. The bubble we had lived in had burst, and the reality of what we'd been through hit home. We left the hospital the next day with an empty car seat and no baby girl to settle into a crib that night. That was hard. Going home for the first time, actually doing most things for the first time without her was horrible.

We couldn't manage a normal funeral, so we decided to have a celebration of life for Alice. We added 60 colourful balloons to the chapel to bring a bit of brightness to the day. Over 100 people attended and the chapel was completely full. We had family and friends fly from Ireland and friends drive long distances in the UK to be there. The Priest (Father Foley from West Cork), who had Christened and Confirmed Alice on day two, cried at the end of the ceremony. He was touched by the amount of people there and the amount of love in the room. And he is right, we do feel thoroughly loved and have been completely overwhelmed by the support, messages, gifts, cards and donations that have poured in from all over the world for us and Alice. We send love and thanks back to everyone, you are in our thoughts and prayers daily.

We were so grateful to the Trevor Mann Unit in the Royal Sussex County for those five days we had with Alice. The equipment used and the one to one care she had was incredible. We started raising money for the unit through the Rockinghorse charity and to date we have raised £5,361. We are meeting with the charity on the 25th January and the consultants at the hospital on 28th January to choose what the money is used for. To donate directly please visit

Of if you'd prefer, purchase one of these beautiful 'Fly little bird' prints for Alice instead and £10 goes directly to the Rockinghorse Charity also. The wonderful, talented and generous Roxy @naked.lunge has designed these for Alice and is very generously selling them from her website. We absolutely love them! You can buy them here.

Thank you for reading Alice's Story xxx


  1. Well done Sarah! Ali would be very proud! I bought a print! Xxmam

  2. Sarah, I know Debbie, I have worked with her for year. I don't know how you could say you are not a good writer, your account of Alice's short life is so moving and full of integrity. I have ordered a print and am looking forward to Alice's spirit inhabiting my home. I wish yourself and David and your extended family all the love in the world. Alice will have felt so cherished - and in return you should feel strength. You will make amazing parents some day. Lots of warm heartfelt wishes. Lynda x

    1. Thank you so much Lynda for your lovely words. You are so sweet. I'm so pleased you bought the print too, thank you so much for that! We totally feel her with us and feel her strength, she would be very happy with all the money raised and all the lovely comments and messages she's had ;) Lots of Love, Sarah xxx

  3. Your words are so beautifully written Sarah. I hope it helped to write them and I know it will help others to read them. I am writing this with more tears for you and Dave. Little Alice will stay in your hearts forever. I can't wait for my 'fly little bird' print to arrive. Take care lovely xxx

  4. Your baby bird Alice has left an imprint on my heart, sometimes people just do that and she resonates with me in a way that takes my breath away when I think of you three. From one mummy to another x

    1. Thank you so much. We are so proud of our little angel. She has done so well to spread love all around the world and raise a lot of money while doing so! It makes the situation easier to accept. Lots of love xxx

  5. Beautiful and very strong words, Sarah. I will hold my little ones that much tighter tonight and love them every moment, good or bad. It's amazing how such a tiny person like Alice can teach us so much. Take care and love to you both and little Alice xx