Brooke,
8th January 2003 - 27th August 2003
Brookes's Story
Brooke Amelia Budd
In Loving Memory of BROOKE AMELIA BUDD 08/01/2003 to 27/08/2003.
We were blessed the day that our first daughter Taylah was born in 1998, and then our second daughter Brooke on 08 January 2003. We had been given two beautiful healthy children, what more could we ask for.
Our lives began to crumble the day Brooke was diagnosed with a very rare degenerative spinal muscular disease called Werdnig Hoffman's Disease when she was only 4 1/2 months old.
I had been to see our GP to get Brooke her 4 month old immunisations and for a checkup because I felt that Brooke wasn't advancing like our elder daughter Taylah had when she was the same age. All our family told me that I was worrying over nothing, that it was just because Brooke was a big baby and she would do things in her own time. I just felt that something wasn't right.
Michelle(our GP) noticed that she wasn't holding her head up by herself when we walked in and asked me if she was always like this. I said yes, was this a problem? She said possibly, that there may be some nerve damage, and she wanted us to see our paediatrician ASAP. She rang for us and we got an appointment for late that afternoon. I wasn't too concerned at this stage so I rang my husband Jamie and told him we were seeing Jeff Prebble that afternoon. Jamie had to pick Taylah up from school for me so I told him not to worry about coming with me to the paediatricians, that I would see him at home. Little did I know what shock I was in for.
Dr Prebble gave Brooke a full examination and we sat down, then he asked me if I could get Jamie to come in right away. We live out of Toowoomba so I said I couldn't and then he told me what I least expected to hear. All these words were coming out of his mouth and I probably wasn't comprehending them fully, then it hit me with a jolt. I said to Jeff, Are you telling me Brooke's going to die? And the look on his face said it all. Dr Prebble told me that this was only the second case of SMA he had seen in all 25 years of him practicing medicine. I just didn't know what to do- I cried and cried. Jeff gave me some information on this terrible disease to read and also made us an appointment with one of the top paediatricians in Brisbane for the very next day just to verify what he believed Brooke had.
I then had to make the long trip home out of town (only 20 minutes but it felt like forever) crying my eyes out, to give my husband & daughter this horrifying news.
Jamie met me at the garage, took one look at me and knew something wasn't right. I relayed what Dr Prebble had told me and Jamie just didn't want to believe what I was saying, so he rang Jeff on the number he gave me to use at any time.
We went to Brisbane the next day and saw Dr Geoff Wallace who agreed with Dr Jeff Prebble that Brooke had SMA. We then had to go through the process of bloodtests on Brooke and wait for final verification on these results. It was the longest 2 weeks of my life waiting to hear what I felt was Brookes death sentence.
Both our families were shattered by this news as nothing like this had ever occurred on either side before.
Now, both doctors had said to us that most life expectancy for SMA affected babies was to the age of about 2 years old, so I thought(rather hoped) that I'd have my little girl until then. It was not meant to be.
I knew they were prone to catching anything going around so I kept Brooke with me all the time, wouldn't let her near anyone that even sniffled or coughed, would only let Jamie and Taylah hold her, I just wanted her to be alright. But she got a terrible chest infection at 5 months and battled with this in hospital for 1 month. We were having daily physio to loosen up her chest and just kept hoping she was going to get better. She had to have a nasogastric tube inserted for her feeding. During the time Brooke was in hospital, I was never far from her side. I became an addition to the children's ward at St. Vincents Hospital, as the wonderful nurses and doctors there took our little family into thier loving arms. Jamie looked after Taylah at home while I took up residence with Brooke at hospital. This was a very heartbreaking and difficult time for the three of us as I only got to see Taylah for awhile each afternoon, and it was extremely hard to be waway from Jamie as he is the one I lean on most in the world.
Brooke never liked to be too far away from me-I always had to be in her line of vision and when I wasn't she soon let me know with her sweet lttle voice.
She could never say too much but one thing I will treasure most, was the day I was nursing her with Jamie by my side, and she looked and me and said MUM MUM. That was the day I think my heart really broke for the first time.
What kept us going alot of the time was the wonderful support we recieved from the special doctor looking after Brooke-Jeff Prebble. Jeff was devoted to Brooke, seeing her twice a day, and with his gentle ways Brooke always had a smile for him when he walked into her room.
We made it home after Brookes first hospital stint for 3 days befroe she was re-hospitalised as she now needed oxygen to help her breathe.
Brooke's last 4 weeks were spent in hospital with me never leaving her side. Our little girl fell asleep for the last time in my arms with her Daddy by my side on 27th August 2003. She was finally at peace in the arms of the angels. I nursed her for the next 8 hours until Jamie could go and get Taylah as she wanted to see her little sister one last time. (Now I must tell you that Taylah was only almost 5 at this time and she remembers EVERYTHING about Brooke to this day).
At Brooke's funeral we played Brahm's Lullaby as this was the only music she would sleep to in the hospital, and to this day I cannot listen to it without crying. It just takes me to a place I really cannot deal with yet.
Living at home again was especially hard for me as I was so used to being in the hospital with Brooke, not getting much sleep, and I believed I could heear her calling out to me all the time. It must be said that now I only can sleep about 5 hours at night because thats what I slept with my girl then.
I miss her so much it still hurts to talk about her, but we have been blessed again now with another beautiful daughter, Caleiah Hope born 21 June 2006, through IVF. Caleiah means 'pure', so PURE HOPE is what we gave and recieved with her birth.