Amazing GraceFrom the end of the second trimester, little Gracie was not given much chance of survival but for a year she continued to fight to prove the medical team wrong. Here her mother Stace Hollingsworth tells the moving and inspiring story of her daughter who bravely fought against the odds and touched everyone's life in a very special way.
We found out I was pregnant with Grace the day before New Year's Eve 2005. My pregnancy progressed normally, and at the 20-week scan we discovered we were having a girl and were told all was well. However, at a 28-week 3D scan, things started going wrong. The sonographer had detected a problem with our baby and said that he needed to speak to our midwife. We were told to go home and wait as we would be called into the hospital for further tests. Eventually, we were sent for an MRI at Sheffield's Children Hospital and this confirmed that our daughter had a rare condition called holoprocencephaly. This meant that, instead of splitting into two parts, the front of her brain had remained fused together. I was 31 weeks pregnant and they offered me a termination. I asked if Grace was in any pain and we were told she wasn't, and that there was no risk to me in carrying on with the pregnancy. It was an easy decision: there was no way we were giving up on our little girl whilst she was still fighting. We would, instead, fight with her. She was stunning and perfectAt 5:27am on September 12 2006, Grace was born full term and bum first, after a natural, spontaneous labour. My beautiful daughter was placed in my arms and, not long after that, she opened her huge dark eyes and looked around at us all, scowling! We had been worried about how she might look as they had told us that she had a bilateral cleft lip, small head and no nose. We needn't have worried because to us she was stunning and perfect. The doctors hadn't expected Grace to survive the birth so they immediately transferred her to the SCBU to monitor her oxygen saturation, amongst other things. When I went down about an hour later she'd been given drugs as she'd been having fits. They didn't expect her to survive the night so, with heavy and scared hearts, we placed a 'do not resuscitate' on our little angel. We wanted everything possible done for her but we didn't want to artificially extend her life. We lived in a room just down from SCBU for the next week, after which plans were made for us to be transferred to York where they would arrange the community team for us. We were taught how to feed her expressed breast milk via her nasal-gastric tube and then how to administer her drugs. Under the care of the Harrogate Children's Community Care team we met a wonderful woman named Julie White. Making a 'to-do' listJulie took us down to Martin House Children's Hospice as she thought that they would be a good source of support. There, we met Dr Mike Miller who took over as Grace's paediatrician. He'd dealt with a few cases of holoprocencephaly before and told us that he expected Grace to live for 16 weeks. Unfortunately the condition is so rare and the brain is so complex that not a lot is known about it and thus it's almost impossible to guess what will happen with each case. With Martin House's help we decided to write a list of things we wanted to do with her, such as having our family portraits done, taking her to the beach, having a naming day and having a birthday. On October 12, Grace had her first birthday. We had a small cake and cards and presents. This tradition of having a birthday a month continued up until she died, with a big party (including a bouncy castle) for her 6-month birthday and an even bigger party for her 12-month birthday. Relief and respiteAs she grew older her epilepsy became worse; at one point she was having more than 350 fits a day. Thankfully Martin House were there to help so we weren't left to cope on our own. Every time we needed them they opened their doors with a big smile and a warm hug. We also used them for respite care and Grace loved going as she adored the attention she got from all the staff. Because of her problems we had to share a bedroom with Grace and we were up and down all night long administering drugs and feeding her but our stays at Martin House meant that we got to relax for a week too. She would stay downstairs in the children's rooms with the staff and we would have a parents' room upstairs which was just like a hotel room. As well as the medical side of things they also filled her stays there with music, painting, stories, etc. Many times we would arrive back at Martin House to find bags, plates and cards with her hand and footprints on: things which are now priceless to us. At each turn she proved them wrongAs time went on we fell into a routine of medication reviews every month or so and a general health review too. We were told as part of her condition she would never roll or speak or probably smile, but at each turn she proved them wrong. She did smile (a huge gummy grin), and if you got her mad enough she would roll. She even learned to babble and said "Dadda" and "Hiya". She was such a determined little thing and oh so sure of herself. She enjoyed rough-and-tumble games and knew that no matter who she was with, SHE was the boss. In October 2007, Dr Miller came to see Grace at home as she'd been ill for a while. He told us she only had a few hours to live. In a daze we called all our families and headed down to Martin House as that's where we decided we wanted to be when it happened. The next five days we spent by her side, day and night, taking it in turns to get some sleep. Grace slept a lot and when she was awake she was extremely subdued. However, true to form, a week later we were able to take her home as she'd pulled through and proved Mike wrong again. The longest night of my lifeChristmas Eve 2007 we were invited down to Martin House as they'd had 10 tonnes of real snow delivered, and were turning their gardens into a winter wonderland. We arrived with Grace to find the gardens packed with lots of other families and a great big pile of cold snow. We took Grace onto the snow and her entire face lit up. She laughed and stared wide-eyed at all the fun and mayhem. We had never seen her so happy. Unfortunately from Christmas onwards Grace suffered with numerous colds and chest infections and each of them took a bit more out of her. Sadly, on March 3rd (the day after Mother's Day), Grace closed her eyes and fell asleep forever. At about 6pm, in my arms and sat next to her daddy on our sofa she gave two quiet little sighs and passed away. We took her back to Martin House for the last time and were given a staff bedroom, where we spent the night cuddling up to her and each other. That was the longest night of my life. The staff there were amazing, looking after us, Grace and our families. We were able to keep Grace in their special bedroom whilst we lived next door and we gave her her last bath and changed her, read her stories and cuddled her. Safe in our hands foreverWe asked for a plain white coffin and we decorated it ourselves. Justin and I also put a set of handprints on the top and bottom so she would remain safe in our hands forever. We chose three readings, all of them appropriate to Grace, and three songs: Twinkle Twinkle Little Star (her favourite), Daisy, Daisy (with the name changed to Gracie), and Amazing Grace. We requested bright colours to be worn and as she left the church we had Scissor Sisters song "Don't feel like dancing" playing. It was number one when she was born and just so appropriate for our girl. Cyber supportDuring her life we received so much support from so many people - not only the professionals but friends, family and even my September antenatal club on Babyworld. The girls there are like an extended family and even donated to Martin House AND bought Grace a star. They were always there for me and when things started to go wrong I got emails and lots and lots of posts of support. If they didn't hear from me for a while (when things were busy I didn't get chance to post all that often) they would leave me FAOs to see how we were getting on. They took Grace to their hearts and shared in all our triumphs with us. I remember when we were down at Martin House, posting to say that we had lost her and the amount of girls who replied, saying they were in tears was unbelievable. The group even organised for Gracie to be Baby of the Week, without telling me, it was such a lovely surprise and we were so proud. When we lost Grace they sent us a card through the post and in it they told us that they had clubbed together to donate money to Martin House - again, another lovely surprise. They have also backed Justin, Adrian and Bob 100% by going onto our website and donating as much as they possibly can - though to be fair that isn't just my Sept ANC, most of the May08 group have donated as have a lot of people who read my pregnancy diary and followed our story. We even had a poem written for Gracie by Jen (one of our September group). Gracie touched so many lives in so many waysGracie touched so many lives in so many ways. She brought out the best in everyone, and still does. I have a necklace that was made before she died which has her fingerprint indented in it. Things have been emotional since we lost her but happily, on May 11, her sister Billie Hope joined us and is helping us face the world again. She was named Billie after her two great granddads and Hope was decided in the terrible week after losing our precious angel. In Gracie's memory, Stacey and Justin have managed to raise over £700 for Martin House, and more recently have got more than £1,000 in sponsorship as Justin, his brother Adrian and his dad Bob are running the Great North Run in aid of Martin House. If you would like to make a donation to help the hospice which was so instrumental in supporting Gracie and her family, please visit www.justgiving.com Where to next?
|
