Isobel - born December 1st 2009.

26/06/2010

Isobel is normal little girl who is very thin with a big hard liver and spleen. She is receiving palliative care for liver failure.

She is generally a happy and inquisitive little girl who responds well to her nannies, smiling and talking to them, enjoying cuddles and her bath.

Isobel's health is deteriorating but she remains comfortable and peaceful.

If you would like to help us care for Isobel you can sponsor some of her general care.

To contribute to her care go to www.chinakidz.org/pages/support and set up your donations either through our Barclays bank account or via Just Giving and email info@chinakidz.org to tell us who you are and that you want your donations to support Isobel. We can then keep you up to date with her progress.

Watching a Lily Bloom

18/06/2010

From our familiar home here in Australia, it’s hard to believe we were in China just over a week ago. Our family had a fabulous time, touring around and seeing many beautiful sights. It was all so amazing....but the thing that will stay in our hearts forever was our visit to the Butterfly Home. There is so much to say about the home and the miracles which are taking place there, but I think the story of Lily will say it best.

Lily arrived at Butterfly home thin, dehydrated and terrified. She is ten years old and has cerebral palsy. Her muscles spasm so badly that she is unable to walk, unable to sit up, even unable to talk. She had been abandoned just over a month ago and you could see bewilderment in her eyes. In the orphanage, she was plagued by an awful repetitive tongue movement which had left her mouth full of painful, infected sores. The constant movement of her tongue made it impossible to swallow. She was literally wasting away. It seemed there was no hope for her.

At Butterfly Home, she was tenderly bathed and given fresh clean clothes. Her beautiful eyes looked confused at first, no doubt wondering what was happening to her now. Lyn quickly placed a feeding tube to get some much needed nutrition into her. I don’t think Miss Lily liked that tube – but it was really important for her healing.

Over the next few days, we saw a different girl emerge. We watched her observing everything around her, and realized how deeply aware she was. This girl does not miss anything! Gradually that desperate tongue movement settled down. We recognized that it was a sign of distress. The poor little girl had been so upset and afraid that her tongue had never stopped. After a few days at Butterfly Home, her tongue would only contort again when she didn’t want to go to bed....just like any other ten year old girl really! She has a mind of her own.

Getting to know Lily takes a bit more time because she cannot talk to you. However, you just have to be around her a while and you start to see how she can communicate. Her eyes follow the movement of people around the room, and she knows when you are talking to her. As she starts to relax, you can really see what a beauty she is. She lets you know when she is unhappy too. Her body language conveys her feelings very clearly.

Saying goodbye to Lily was so hard. We wanted to stay and witness more of her transformation. Our family will always feel linked to this sweet girl with pretty eyes who has been through so much. Now I am home in Australia looking back at pictures taken on her first day, and on her third day. Her skin looks healthier and her eyes are shining. Such a change in just a few days – amazing! And tonight, I am even more excited. Lyn has sent a picture of Lily smiling. Smiling! When she first arrived, you would not have thought it possible. Apparently she has been laughing a lot, and is happy most of the time. What a joy to hear this news.

Lily still has a long road ahead of her. She no longer tolerates her feeding tube, and is taking food and liquids orally. This is fantastic, but her intake is still low. She is terribly thin and needs to eat more to gain weight and strength. Independent living will never be possible for her, because her disability is so severe.

But though we don’t know what her future health will be like – we do know that she is a precious child. She deserves to smile and laugh and be loved. I am so thankful that Butterfly Home is giving her that.

After Martha

08/06/2010

By 6 months old most babies have bonded with their parents and other close family members; they know their home environment, the sights, sounds and smells. Their security is in the arms and smiles of those who care for them daily, feeding, bathing, changing nappies, playing, smiling, burbling and touching.

How could I explain the harsh fact to Martha, that earlier that day her Mum & Dad had made the dreadful decision to abandon her? We can only surmise at the anguish they too felt as they began life without this beautiful little girl, normally developed apart from the effects of her advanced liver disease. Unlike many children we care for Martha was a well cared for child, her skin, hair and general alertness testified to the fact she had come from a loving family. Judging by the lack of needle marks in her skull she had not been subjected to heroic hospital treatments; perhaps her parents only just realised something was very wrong with their increasingly thin, jaundiced daughter and took her to the hospital to be told the dreadful news that their daughter was dying; nothing could be done for her.

At the sound of every Chinese woman’s voice Martha would turn desperately scanning the crowds in the streets or hospital we had taken her to – desperate to be reunited with and comforted by her mother. As she searched it was all too obvious that she was a dying child, her pain was both physical and spiritual, and the agony in her eyes and cries was heartbreaking.

At the hospital the doctors were very reluctant to drain her abdomen, bulging taut with fluid from her sclerotic liver, fearing she would continue to drain from the small hole they would have to make. They wanted to admit her, but she was already beyond saving, she needed comfort and symptom relief, not the ‘all out till death’ approach practiced here so defensively.

I took her to the Butterfly Home and began to treat her physical pain; eventually she fell asleep, exhausted. The next day we drained her ascites. Thankfully the doctors at the hospital were right, the hole did not close and the fluid continued to leak for a week, until the day before she died.

Martha didn’t want to eat or drink, she allowed us and her nannies to cuddle her and make her comfortable in her cot. Life was a burden for her, full of pain and loss. I would love to be able to say she smiled once but she didn’t. The most we could do for her was give her physical relief from the pain and discomfort. When she started to bleed internally we prayed that she would go quickly and peacefully. She did; as she lay in my arms her breathing and heart slowed to a stop and she left her suffering behind – for the lightness and joy of eternity.

Martha left another legacy, she impacted us with her grief reinforcing our determination to help families like hers so parents can be with their children, comforting and caring with our help until the end; then to be cared for themselves during their grieving. I have nursed many many dying children but for the most part have been spared the sight of the agony of grief in their eyes, the loss of hope and security, the depth of their abandonment.

Before Martha I ached for the parent’s grief and loss; Martha shared hers with me and I will never be the same; I understood the message in her eyes and know we have to persevere and do the impossible……..make palliative care understood and available for families like hers.