Sunday, November 14, 2010

Kidney Kidnections

This weekend, our photographer friends Tim and May came and took some more photos of Miss Ashlea.  Our friend Simone is putting together a book called Kidney Kidnections, that will contain lots of stories of children living with renal disease.  Tim and May came and took some photos of Ashlea for her story in the book.

Click here for the link to the photos.

Seriously... how good are those pictures???  I am totally jealous of how easy they made it look to get a great photo of Ashlea, and now I have a huge dilemma.  Which photo(s) do I choose for the book? Please leave your suggestions as I am having a hard time choosing!

Here is the original draft of Ashlea's story for the book:

Ashlea's Kidneys – Robbed of Blood

Ashlea's kidney story starts well before birth. When I was just 7 weeks pregnant an ultrasound revealed that I was having identical twins. Specifically, mono-chorionic twins. At the time I had no idea what that meant or how that term would forever change the course of our lives.

As the pregnancy progressed, one twin was always slightly smaller than the other, until at 22 weeks we discovered our babies had severe twin-twin-transfusion syndrome. This is where one of the twins (Ashlea – our smaller baby) gave her blood to her twin, leaving her deprived of blood and therefore oxygen and nutrients. Her sister Audrey was left close to heart failure. This ongoing transfusion meant that Ashlea had no blood flow through her kidneys, or urine in her bladder for the remainder of the pregnancy.

Ashlea and her sister Audrey were born at 27 weeks 4 days gestation. Ashlea weighed a tiny 570gm due to the severity of her conditions in the womb. Not long after birth her condition deteriorated rapidly. By the 4th day of her life she was in complete renal failure and suffering complications such as high potassium levels combined with low blood sugar. That was the first time we were told that she may not make it through the night. It was not the last.

As her first week progressed so did Ashlea's renal failure. She should have been passing 2 -3 ml of urine per hour, instead she was passing only 2 – 3 ml in a day. She swelled up with fluid, and was unable to be fed, and remained on full life support. Her creatinine (measure of kidney function) peaked at 495 and her urea at 20 – numbers that would easily put an adult on dialysis, but because of her prematurity this was not an option available to us. We had to wait and hope and pray.

Would her kidneys start working? Would she live? At that stage her survival was an hour by hour thing. At no stage did it occur to us that if she did survive she could be left with ongoing kidney problems. We thought that if she survived, she would recover completely. Either she would live and recover, or she would not survive.

We were wrong.

By the end of her first week of life Ashlea's kidney situation was dire. She was in complete kidney failure. She hadn't passed any urine in the 24 hours that was day 7. She was on life support and requiring a lot of breathing support and other medications. Finally on the morning of day 8 she did a big wee (5 whole mls). We were elated. Her kidneys were beginning to work. She was going to live. Everything would be OK, or so we thought.

It took many weeks for her to slowly pass all the fluid she had accumulated during that first week, and her creatinine levels started coming down ever so slowly. Unbeknownst to us, they never even approached normal levels, but we still believed that eventually they would get there.

At 10 weeks of age Ashlea had another major setback requiring her to be put back on full life support. Again her life hung in the balance. It was at this point that we realised her kidney failure was going to be an ongoing issue. A kidney specialist from the Children's Hospital at Westmead was consulted and she gave us her initial prognosis: Ashlea would need a kidney transplant sometime between the ages of 2 and 4. If she did really well it may not be needed until around the ages of 6 – 8.

Ashlea is now 4 years old and so far has not needed a transplant. Her creatinine levels have slowly been rising over the last 4 years, but they are rising slowly and she has been quite stable kidney wise. We have discovered some other illnesses and disabilities in the intervening years – all related to the twin-twin transfusion and resulting early birth. Ashlea has cerebral palsy, a developmental delay and is legally blind as well as having chronic renal failure. In spite of these difficulties she is making amazing progress and brings such joy to our family.

We are still unsure exactly when Ashlea will need her transplant. Her dad and I are both matches based on blood type, however Murray's family have a strong history of diabetes so it will more than likely be me who donates a kidney. Again it is a matter of waiting and watching, and hoping to put it off for as long as possible.

In terms of day to day looking after a child with kidney failure, renal failure doesn't add too much of a burden to our lives at the moment. There are a couple of medications we give daily and tube feeds to be prepared, but hospital visits are minimal. We see the kidney specialist for a blood test and check up every 3 months, and tweak her feeds and medications as needed. Otherwise we stay away from the hospital as much as possible!! Ironically, Ashlea has developed a condition called diabetes insipidus which means she is unable to make her urine concentrated, so we have gone from her initial days where she wasn't passing any urine at all, to now passing buckets and buckets each day.

People often say to us “I don't know how you do it” or “I could never cope with that”, but the truth is if they were in our situation they could do it and they would cope with it. We love Ashlea. In our situation the alternative to looking after a child with these disabilities, would have been to bury a child. I know which I choose. Having a child with kidney failure and other disabilities makes you realise what is important in life. It doesn't matter how smart you are, or how rich or successful you are. What matters is that you love, and are loved. Ashlea might not have the same quality of life as her twin, but she loves. And she is loved. What else is there? Before having Ashlea I could never have imagined coping in a situation like this, now I can't imagine my life without her.


8 comments:

Sarah said...

Oh Alison, Even though I have known you a while now and have read your girls birth story a few times on here and watched you years ago on RPA, this draft for Ashlea's story in the Kidney Kidnections book is just fantastic and of course it brought me to tears again.

Love the photos and very very hard to choose which ones but I am going to let you know which ones I like (even though you haven't said how many you have to narrow it down to for the book?) I am going identify them by numbering them as each one appears on the photographers site:

1st Photo
3rd Photo
4th Photo
6th Photo
7th Photo
10th Photo
12th Photo
15th Photo
19th Photo
20th Photo
21st Photo

See I cant narrow them down either sorry!

Sarah said...

P.S I know the 1st and 21st photos are the same shots but one in colour and one in b/w but I just love them both!

Anonymous said...

Sarah, absolutely amazing! Thanks so much for sharing! I especially loved your last paragraph - soooo very true xo

Megan

Simone said...

See Alison...that just proves the book is gonna be perfect, oh and I love the photo suggestions hehe

Nerida said...

Beautifully written Alison. I love the last paragraph too! N xx

Anna said...

I have no idea which ones to pick. They are all stunning. I love what you have written.

Ho Keung and Yin Ping said...

Thank you for your sharing, it is very touching, especially the last paragraph, so very true but very often being overlooked in daily life.

Anonymous said...

what I was looking for, thanks