Our daughter Libby was born on 23rd August 2004 at 37 weeks gestation, weighing 6lb. She was born at a midwifery led unit and it was a very long labour and a water birth. Unfortunately Libby was in distress during the birth and this was not detected. She was born in very poor condition and she was not breathing. She had to be transferred to the main hospital urgently following her birth, and went to the neonatal unit. She started having seizures when she was about 12 hours old and had to be ventilated and sedated heavily. She stayed in hospital for 2 weeks but fortunately didn’t have any more seizures.
She was an unsettled baby at times with colicky type difficulties. She struggled to put weight on and generally her growth was poor. As a health visitor myself, I was worried about this, and I was particularly worried about her head circumference. When she was 4 months old we noticed she wasn't moving the right hand side of her body, and when lying flat on her back, she would lift her head up off the floor and not be able to lay flat. She also always kept her right hand in a fisted grasp.
We had regular reviews with the hospital because of her birth so we discussed this and we were advised she needed an MRI scan. This was done when she was 7 months old. We went for the results a month later and we were told the devastating news! The words the consultant said on that day will live with me forever! He told us Libby had extensive brain damage on both sides of her brain but more so on her left side. We were told that it was a good sign that she was able to smile! (Libby's smile is like her trademark! It lights up the room and despite all her difficulties she always manages to put on a big smile!)
We were told it would be very unlikely that Libby would be able to walk or talk. They said she would be in a wheelchair for life! This news was devastating!!!
We were told she had a condition called Hemiparesis! This is weakness on one side of the body. Hemiparesis, or one-sided ‘hemi’ weakness, ‘paresis,’ affects about 8 out of 10 stroke survivors, causing weakness or the inability to move one side of the body. One- sided weakness can affect your arms, hands, legs and facial muscles.
However, Libby is a fighter! Despite the odds she did walk at age 23 months and although she didn't talk properly until she was almost 4 years old, she has amazing strength and character that shines through to all that meet her.
Ironically, when that consultant discharged her from his clinic, he had medical students with him and told them how Libby actually proved their theories wrong. The child he saw in front of him was certainly not the child you would expect to see considering the damage seen on her scan.
Libby has had a fabulous team of support through physiotherapy, occupational therapy and speech and language therapy. She also attended a fantastic pre-school nursery, specifically catering for children with physical disabilities from the age of 2-5years. From here she attended mainstream school for her primary years, and is now in a special school for secondary school as Libby has learning difficulties and struggles with anxiety also.
Libby has had a huge amount of clinical support throughout her life. She has worn Piedro boots, had serial casting and now wears a splint (AFO) on her right leg. She has an amazing orthopaedic consultant and has undergone 3 operations in the last 3 years alone. She has used a wheelchair now for 3 years. Her most recent surgery has resulted in her being confined to her wheelchair for 6 weeks!
I originally heard about Whizz-Kidz through charity events I have attended through work. (I now work with children under 5 years with a disability.) We approached Whizz Kids for a wheelchair a few years ago. Although she had a self-propelling chair already, she struggled to do this with ease due to the weight of the chair. Shortly before one of her most recent operation, we were invited to attend an assessment, and we were thrilled with the results. Amazingly her new lightweight chair was available in just a matter of weeks after the assessment, and I can honestly say it is fantastic! Libby can self-propel with ease and it has given her so much independence now. It is extremely light weight and very modern looking!
After reading more about Whizz-Kidz through the website, we were very keen to set ourselves a big challenge!! We applied for a charity place at the London marathon and that was just the start of our journey! We have walked a marathon before but never ran one so this is going to be a big challenge for us! In our heads, all we keep thinking the pain that we will go through throughout this next year is nothing compared to the pain our little girl goes through. The fact she has been fine through all her operations, and has always comes out the other side smiling, will be the driving force behind our challenge!! We have lots of great ideas to raise funds but we are most confident that our beautiful little girl’s big smile will support our pledge and help us along the way!
So thank you to Whizz-Kidz for all your amazing support and let's bring on the challenge!!!
AKA Andrea and Richard Tipper
Tagged under: London marathon fundraise 5k 10k