Tia Lillie Byron Mcdonnell

~In Loving Memory ~

Tia Lillie Byron McDonnell
Born on 20th March 2008 at 23:45
Fell asleep on 21st March 2008 at 21:00

Baby daughter of Hannah Byron and Andrew McDonnell

Tia was born weighing 9lb 2oz and had a thick head of long dark brown hair, much to the surprise of everyone in the delivery room! She had dark blue eyes and was a lovely pink colour. She will be very much remembered by those that got to meet her. She had the cutest big feet...the newborn socks I put on her just about fitted.

Sadly Tia passed away at only 20 hours old due to Pulmonary Hypoplasia. When I was 21 weeks pregnant the doctors found that Tia had a pleural effusion (fluid in a space in the lung where there should be none) and this had caused her right lung to not be able to developed properly. Further ultrasounds later found that she also had a Congenital Diaphragmatic Hernia (CDH). Tia was given a 60-70% chance of survival before birth, which unfortunately decreased when she was born. The doctors realised her left lung had also not developed the way it should have. This caused Tia to not be able to get enough oxygen round her body and they were unable to stabilize her. Her little heart stopped at around 9pm as she no longer had the strength to fight.

The whole pregnancy was spent worrying about Tia and how things might go, by not just us but most of our family and friends too. With Andy's help I was able to stay positive and we really believed our little girl would be Ok in the end. I was referred to a Fetal Medicine Unit in London and attended fortnightly check-ups and ultrasounds, which in spite of everything we enjoyed, as we got to see our little girl growing at every stage and we got to see her lovely little face in 4D. At around 26 weeks pregnant I had a pleuro-amniotic drain which involved a needle going through me and into Tia's chest to drain the excess fluid, which unfortunately re-accumulated a week later. The decision was made not to drain it again as the cause was unknown and it would have been unnecessary to keep putting both me and Tia through the pain. The plan was made for the birth and I would be induced two weeks early so that the right people could be standing by ready for Tia entering the world. I went into hospital on Monday 17th March where we had the drain done again, in order to give Tia more lung space when she was born, I was kept in for a few days after that. I met some lovely people while in hospital and some great midwives. One night before bed I was put on the monitors to check Tia's heartbeat and her little personality already started to show, she would have a lovely heartbeat while the midwife was standing next to the machine but the moment she would walk out of the room, Tia would 'play up' and make the alarms sound only to return to normal when the midwife came back in. This would make both the midwife and me laugh, she was so much like her daddy already, a joker. After days of waiting anxiously for a cot to become available and then a delivery bed, it came to the Thursday (20th March) and I was finally to be induced, at 39 weeks. I was taken down to the delivery room, more nervous than I've ever been in my life, not for the pain but for the worry that I knew would come afterwards. The room was really big and all the equipment that lay waiting for the baby terrified me. I was induced at 16:55 and then spent the next few hours trying to pass the time. My waters broke naturally with what felt like a 'pop' at 21:50 and by 22:00 I was having really strong contractions.

At 23:45 out came Tia with a hand over her face and the cord wrapped around her neck. The doctors lay her on me for a second while they did what they had to do with the cord. I will never forget the proud look on Andy's face when he looked at me, sobbing with tears telling me how beautiful our baby girl was. I barely got to see her before she was sedated, intubated and whisked out of the room and down to the NNU. They had to sedate her so that she wouldn't try and fight them as she tried to breath by herself and this could have caused her harm. As soon as I got cleaned up and stitched from my 2nd degree tear, I went straight down to meet my little girl.

She lay there so small and helpless in her incubator and from then on I didn't leave her side, unless I had to step out for the doctors to get to her. She had taken a bad turn just after she was born and they had to change her ventilation as she didn't like the first method. I had refused to go up to the ward to sleep and Andy didn't want to go home, we both waited in the NNU waiting room a few rooms down from Tia for the next 3 hours until we were allowed in to see her. She had a number of x-rays and tests done over the next few hours which was showing that she was not doing as well as we had all hoped she might when I was pregnant. Her right lung had ruptured leaving her with two poorly lungs and not able to oxygenate her body. She was given a blood transfusion and then she started to perk up, looking a lovely pink colour for what would be the last time. Her oxygen levels were sitting at around 70-80% and this gave us so much hope for her.

The consultants explained how they had now tried everything they could for Tia and now we just needed to hope she could stay the way she was, it was all in her hands. I stayed next to her for the next few hours holding her tiny hand and kissing her and singing silly songs to her. The nurses actually told me that while I was with her doing these things, her stats stayed good. It came to about 20:00 that night and we had to step out while they did another x-ray and staff change over. Just after 20:30, Tia's nurse was banging on our room door with tears in her eyes, telling us to come quickly. Tia had taken a turn for the worst and her lungs were failing her...her stats were reading at about 7% oxygen in her whole body. I walked up to my little girl crying and angry that they had turned off her overhead heater, I was told this was because her temperature had been very high. I knew what was happening but I couldn't face it. I pleaded with Tia to perk up but I knew it was nearing the end. Andy and I were taken into a room where the doctor explained what was happening and asking for our permission to turn off her machines. They assured us that they had been on the phone all day to Great Ormond Street hospital who were giving advice and until all avenues had been exhausted. Even still, I begged the doctor to try something else but there was nothing she could say to me, she just sat watching me screaming and crying. The next thing, there was a knock at the door with a male nurse calling the doctor out. The doctor walked back in and her next words were "I'm sorry, but her heart has stopped"....Those words will stick with me forever.

Tia was supposed to be transferred to GOSH just as soon as she was stable enough to have repair surgery on her diaphragm, but unfortunately, we never got there.

I sometimes feel so angry with myself for being so selfish and asking Tia to hang on when she was so weak, but I just couldn't bare to lose her, I loved her too much to imagine being without her. It seemed that she knew how hard it was for us to make the decision that was being asked of us, so she made the choice for us.

Over the next few hours, we gave her her first cuddles and bathed and changed her. Walking out of the hospital at around 1am without my little girl was just horrible. We made sure to get as many memories of her as we could including photo's, a lock of her hair, the hat she wore in the NNU, her cord clamp and her hand and footprints. They will never be enough, but they help.

I am truly thankful to the specialists that looked after Tia while she was inside me, especially Mr Pandya and his team. We will be eternally grateful to the nurses and doctors in the Neonatal Unit who did all they could and for not leaving Tia's side, they really are angels and we knew our little girl was in the best hands there. Also the family and friends who have been there for us both and have helped get us through this hard time. Also my midwife, Linda Henry, who has been great support and who have not forgotten about me.

Tia was laid to rest in Waltham Abbey Cemetery on 2nd April 2008 after a lovely service held at Waltham Abbey Church, by Rev Martin Webster. The church had few empty seats, if any and it was nice to have such a good turn out for our little girl. It just showed how many people wanted to meet her and how loved she is.

I would like to thank all those people who kindly and generously donated money at Tia's funeral to the 'Tia Fund' that will soon be given to the NNU at University College Hospital, London, in Tia's name to help sick babies like her.

Tia meant to world to both her me and her daddy and she would have been the most loved and spoiled little girl there ever was. We may have only got 20 hours with her but it felt like a lifetime and we will cherish those hours in our hearts forever.

Tia you are the most beautiful thing we have ever seen. You are the best thing that has ever happened to us and we are, and always will be, so proud of you princess. We will never ever forget you! Sleep well and go play with angels darling, our only comfort is knowing you're not suffering anymore...

We love you so much, Mummy & Daddy xxxxx

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Update May08
We raised £650 from Tia's funeral which was donated to the Neo-Natal Unit at UCLH on 28th April 08. With the help of Gift Aid the hospital should also be able to claim an extra £182 from the government, giving them a total of £832! We suggested that the money be used to improve facilities for parents who's babies were in the NNU. There is now a memorial of Tia on the wall of the NNU showing the money that was donated in her memory.

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Update Sept08
I am pregnant again with Tia's little brother or sister due 5th February 09! We know what we are having but are not revealing until the day, but lets just say we are over the moon! We know that Tia has been watching over us as for once we are getting some good luck and things are looking better, i hope that this little darling i'm carrying will resemble you so we can see you growing up with them as the years go on. Nothing or no-one can fill the empty space we feel in our hearts, but I guess having your sibling is the closest we will be to you my sweetheart. xxxxxx

Update Feb09
Tia's baby sister Layla Rose came into the world on 7th Feb 09 at 2:55am, weighing 8lbs 12oz. She is happy and healthy and the image of her big sister..x