T'keyah To The Moon and Back
Kerry, a homeschooling mum of six, tells the story of her fifth child, T'keyah, born with Dandy Walker syndrome.
Kerry and husband Robert faced the greatest challenge of their lives. At the 20-week ultrasound of their fifth baby, they were told that this tiny life had a condition called Dandy Walker Syndrome. If she survived, she might never walk, talk, eat or be able to function normally.
T'keyah (meaning 'strong one') is now a delightful three year old. Although she has severe health issues, she is a happy, engaging member of the family. She melts her parents' hearts by telling them, "I lub you to the moon and back".
Kerry and Robert have six children, with all being homeschooled. They have found that another of their children has a Dandy Walker variant (a less severe form), and an inoperable brain tumour.
In between homeschooling, frequent trips to specialists in Sydney and caring for her children - Kerry finds time to assist an elderly neighbour with her housework, and holds a craft afternoon with the folk at a local nursing home one day each week. Kerry is one very busy mum and active community member.We were pregnant with our fifth baby and everything was going great. We had a scan done at 13 weeks to check the Nuchal Translucency and it came back a bit high - so I got sent for blood work. But the results were fine. So we just sat back to enjoy the pregnancy.
Our 18-week ultrasound came up, but a couple of our kids were sick, so we had to change the date. At the 20-week ultrasound, we had our two youngest with us - Kye, nearly five, and Charlize, eight months.
The sonographer had been scanning for a bit and chatting to us. Then she went quiet and said she had to get someone to check something. I knew straight away that something was wrong and started crying. Robert told me to wait and not get too upset, but I just knew.
"Please tell me what's wrong!" I pleaded as she returned with another sonographer.
She repeated that they just needed to do some checking. After a few minutes they asked Robert to take the kids out as they had to do an internal ultrasound.
When they called Robert back in, they informed us that they had trouble finding part of the baby's brain. We had to come back in an hour to see the obstetrician. Walking into the obstetrician's office, I was so scared. He told us that the baby had Dandy Walker Syndrome. We had no idea what that was.
He said that he couldn't tell us if our baby was going to live or not. He'd already made an appointment for us to see a fetal specialist in Sydney for that that Thursday. We were told we could have an amniocentesis - and if we wanted to terminate then it was still just within the time frame. I cried for hours. My baby was starting to move and I didn't want to lose her. We decided not to go through with the amnio - we were going to try to make it as far as we could for our little girl.
The doctors in Sydney were great. They did offer termination, but due to the fact that there were such a range of degrees as to how the DWS (Dandy Walker Syndrome) could affect my baby, I couldn't live with the 'what ifs'.
At 26 weeks they found heart problems and asked again about having an amnio done. But for me, the risk of going into premature labour was too great, and my baby had enough battles to face without me adding to them. The doctors were worried about it being a chromosome problem - namely Trisomy 13 and 18 - and they weren't good outcomes.
She was battling on, and although she had heart and brain problems, she was so active at times that I would forget that she was so sick. From the 26-week mark, there were weekly trips to Sydney for ultrasounds by the obstetrician and the heart specialist. At 33 weeks we went for our normal weekly scan, when they found out she had developed hydrocephalus. Up until that point she had been small for dates, but her head had been the normal size. In the matter of a week her head grew from the size of a 30-weeker to the size of a full term baby.
They sent us to see the neurosurgeon to get his idea on when they should deliver her. The NICU doctors came and saw us and they were worried that she wouldn't cope if she was not born soon.
The neurosurgeon sent me for a MRI so he could get an idea of what was happening. Thankfully, he said she was coping fine and he would check her when she was born.
We went back at 35 weeks and again her head had grown. They decided to give her one more week - and then we would meet our precious little girl.
At 36 weeks I had a caesarean section. All the doctors had told us to expect her to be rushed off for surgery straight away. But we got to have a quick hold before they whisked her away to the NICU. When they were taking me to my room they took me into the NICU first for another look at her. I wasn't able to hold her then, but she didn't need heart surgery straight away. Her heart wasn't as bad as it appeared in the scans.
It was the hardest thing for me not to have my baby next to me in the room. I cried all night. The orderly took me back down about 9.30pm so I could see her. She was sleeping, and up to that point hadn't needed any oxygen or anything.
She was much stronger then they thought she would be. The next morning I was up and showered and waiting to go and see her. But they wouldn't let me go until I had been checked, and put into a wheelchair.
When we got down to her she was still sleeping but they said she had a good night and was managing on her own.
It became a daily routine to measure her head circumference. At birth it had been 40.5cms. No one had prepared us for what her head might look or feel like. The first time I picked her up I panicked at the feel of her head. I thought I would hurt her.
We saw the neurosurgeon and he was happy for her to wait for surgery. After two weeks in Sydney, we were transferred home. We spent nearly a week in the special care nursery at our local hospital, just to get her breastfeeding. Due to the hydrocephalus she was a very sleepy baby, and after a few sucks she would fall asleep.
So she was mainly nasal tube fed. When she had gone a full 24 hours on the breast we were allowed home. It was so great to come home, but we worried that her condition might worsen.
We were home for Christmas. Two weeks later we had to go for a checkup with the neurosurgeon. We packed a lunch for everyone and went to Sydney. Her head circumference had increased and after he checked it he rang and booked theatre and sent us to emergency to be admitted.
So at five weeks of age, tiny T'keyah went in for her first brain surgery. She had to have a shunt put in to drain the fluid off her brain. A subsequent MRI showed a few other problems they hadn't yet picked up on. As well as the DWS, she has Agnesis of the Corpus Callosum (ACC) and Cerebellar Vermis hypoplasia (CVH).
T'keyah has proved all the experts wrong. We were told if she lived past birth that she would be a complete vegetable and never walk, talk or eat. Today, she is a lovable three year old. She is walking at times, was talking, and can eat (although mostly has to be fed and cant handle lumps a lot of the time.)
In the first six months of her life she went through five brain surgeries. She was so tiny but the most placid beautiful baby, and she quickly had everyone wrapped around her little finger.
T'keyah had more surgery when she was over one, and had a hernia fixed when she was two. She has a lot of eye problems and will be facing eye surgery in the future but everything was going fine until May last year.
T'keyah developed a blocked shunt and we nearly lost her. The block wasn't obvious and the doctors didn't want to go in and operate until they were sure what was wrong. She got rushed to Sydney on the Wednesday night and by Friday her condition had worsened to the point that she had a massive seizure. Her heartbeat and oxygen levels dropped. Robert and I were terrified of losing her.
Since then, she has lost the ability to talk, and the ability to walk without hurting herself.
Her eating is back to the stage of about a 10 month old.
When T'keyah was one, the doctors had decided to check our son Kye, then six years old, as he was experiencing developmental problems. They found that he has similar problems with his brain. They also discovered that he has a brain tumour. This was devastating news. His tumour is inoperable so we just hope every day that it doesn't grow.
Life today is pretty much 'normal' in our terms. There are days each week where T'keyah cannot do anything - she even has trouble swallowing. At these times we just have to monitor her and be ready to rush her down to Sydney if she becomes worse. We have weekly appointments for therapies and just pretty much try to keep her healthy.
Both T'keyah and our son Kye have regular meltdowns. T'keyah gets hysterical and Kye just cries for no reason. But it's just our life and we wouldn't change either of them for anything. We are so proud of all our children.
We started homeschooling our older children because of Kye - he was really struggling at school but didn't qualify for any assistance. We are registered with the Board of Studies and they have found that our homeschooled children are doing better than their grade level.
They get together with other homeschoolers every week for sport - and different activities are organised throughout the year as a group. The eldest two have done a forensics course and loved it - it's not something they would have the chance to do at school!
Life is certainly difficult at times, but family is everything to us. And our hearts melt when little T'keyah climbs up onto our laps and tells us "I lub you to the moon and back".
Kerry
Compiled by Anni Taylor 2007
Update July 2010
Sadly, T'keyah lost her battle with Dandy Walker syndrome in July 2010.
Her parents have requested that if people wish to honour her memory, they make a donation the Sydney Children's Hospital. Donation details are as follows:
1) Visit schf.org.au/donate.aspx
2) Enter the dollar amount (including cents) and select the frequency
3) In the ‘Have you donated before’ field, select ‘Yes’ or ‘No’
4) In the ‘Is this donation in memory or celebration of someone’ field, select ‘In Memoriam’
5) Enter ‘T’keyah Dawson’ in the field beneath
6) Enter personal and payment details for receipting
