Our Stories

We are the parents of four children. Our youngest two girls both have Down syndrome. Hannah is sixteen years old and Tiana is eight. We are a single income family and so we were very disappointment when the NDIS rollout signts were announced, to find that we are the last rollout sight in NSW and must wait for another three years for adequate funding to meet our girls needs.

We are fortunate that Hannah enjoys good health and has good speech. Tiana has had a lot of hurdles to overcome in her short life, not least of these is that she also has Dyspraxia of Speech.

I cannot express my gratitude enough, it was like winning the lottery, to be given a grant to help Tiana reach her potential. We waited eight years to hear Tiana say “I love you”, and those few words have only come about through intensive speech therapy.

Thank you for your support.

Lyn and Glen Legge

Welcome to The Right Start foundation. A place of love, support and friendship. I would proudly like to share with your all my beautiful princess Eve.

When I turned 32, I found out a little surprise was growing inside of me. My third child. It was from a new relationship. Her half brothers aged 14 and 8 were eager to meet their new brother or sister when they found out the news. I did not find out the sex of Eve until she was born. The pregnancy was the smoothest pregnancy I’d ever had. I had 2 separate 3D scans done to get awesome pictures and videos. I had also a trans nuchal scan and was told everything was fine.

My due date was going to be 8th January 2012.

I had plenty of time to get prepared for my new child, organizing leave with my work and return dates, as well as setting up a nursery and I enjoyed every moment of the smoothest pregnancy possible.

On the afternoon of 13th December 2011, I felt quite a lot of pain, which gradually increased throughout the afternoon. I called my midwife who told me just to relax it was probably Braxton hicks or the like. I all of a sudden needed to go to the toilet. Then my waters broke.

Immediately I called the midwife in a panic, who then told me to go to the hospital to get checked out. Once my waters broke I had no more pain and the doctor was about to send me home from the hospital. She all of a sudden decided to do an ultrasound before I left. Thankfully she did. I then found out my baby was breech.

Within half an hour I was in the operating theatre getting an emergency C-section. I was very overwhelmed as this was not my birth plan at all. My boyfriend at the time was a mess and offered very little support to me.

At 2159pm on 13/12/2011 my baby was born. She weighed a tiny 2.5kgs being 3 weeks and 4 days early. A C-section turned into a T section and the two obstetricians who ended up doing the cesarean had a lot of trouble getting her out.

Once she was out I heard no crying for a couple of minutes then heard a little whimper. After another minute or so the midwife came over to me and said it was a baby girl. I was so excited but wanted to know was she ok. The midwife said they just have to get some oxygen onto her and have a good look and they would bring her over soon.

I was relieved and excited I had a baby girl, a princess finally to add to my two handsome young men. But I couldn’t help but feel there was something wrong. I could see the pediatrician walk in the room and go towards the crib, which I could still not see at the time. There was some fuss in the corner. After some 10-15 minutes or so they brought her over to me to give her a big hug. The tears of joy ran down my face. They then said they needed to take her to the special care nursery for a few more checks and some oxygen. She was whisked away quickly and her Dad went with her.

Whilst I was waiting in the recovery area by myself, the midwife came in to see me. She said she had some news for me. I felt instant panic and dread over me. She said your daughter is currently being checked in the special care nursery to keep an eye on her heart and her breathing. We also suspect she has a chromosomal abnormality. I said what do you mean a chromosomal abnormality. She replied “Down Syndrome”. My heart sank. I replied but is she ok. She said they will be monitoring her closely, but they will take me to my room and when

I wake up in the morning I could go and see her. I then demanded to go and see my precious girl. They took me to the special care nursery to see her. It was daunting with monitors on her chest and to see an oxygen mask beside her. I looked at her dad and we were in some disbelief but here was my precious princess who wanted to get here in a hurry. I held her and tried to feed her, but due to low muscle tone in her mouth, she could not suckle. I then got told I had to go to my room and rest.

I was then wheeled to my room in which there was another family in also. All I wanted to do was cry. And I did. Thank goodness there was a very caring nurse on that night at Campbelltown Hospital to whom I will be forever grateful too. If only I could remember her name. She organized me to have a private room. Once I was then settled reality sunk in. This is not what I wanted for my darling girl. But she was my princess. I couldn’t help but think a lot about a girl I knew, Simone, in whom I’d played with as a child at dog shows. Seeing her grow up. Such a fun and happy girl but also very cheeky. She happened to have Down Syndrome. I knew it would be a hard road, but saw how much love she brought into peoples lives and knew everything would be ok.

I was in and out of the nursery all night trying to be with my little girl. Then the next morning my room filled with doctors. I had a visit from the midwife, the Paediatrician and geneticist who all explained to me about testing that needed to be done to confirm

Eve had Down Syndrome. The preliminary test is called a FISH test. This took three days for the results to come back. I would say I was upset about it all for a good few days. Lunchtime that day, I was allowed to bring Eve into my room. I cherished every moment, but also couldn’t stop thinking about what the future would hold for her. I then had some friends and family visit. They were told before they came in that they suspected she had down syndrome.

Everyone seemed to be in their own denial, but deep down I knew this is how my little girl would be. Everyone avoided the issue of Eve having Down Syndrome and welcomed her but seemed to be tippy-toeing around the fact.

After three days of being in the hospital, and the following appointments made of cardiologists, geneticists, pediatricians and respiratory specialists the Paediatrician Dr Dunstan walked into our room with the geneticist my midwife and a nurse. We were then told the news confirming that Eve had the common form and non-hereditary version of Trisomy 21, “Down Syndrome”. They handed me an information pack on Down Syndrome by the Down Syndrome Association of NSW and said its all about early intervention. You must start it as soon as possible.

Of course, I cried some more with this news. Wondering what life would be like for my little girl. But I had already now prepared myself for this news. I loved her no less and bonded really well with her. She loved her bath times back then and was the most content baby I’ve ever had as well. Not to mention she was a great sleeper.

I then asked when could I get out of the hospital as I had only planned on being there for 6 hrs maximum after the birth of my child. I was told they had a few more tests to do and her SWISH test as well which is a hearing test so probably the next day I could go home. It came to the day to go. Eves hearing test was done. She failed on one side then passed on the other. Then rolled over and the same for both sides. I was then told she would be referred to Randwick Children’s hospital as she has some sort of hearing issue as well. I began to worry for my daughter’s health and well being, but knew we would get through it.

The time came with numerous appointments in hand to leave. I was glad to be going home.

All I can really remember in my head now looking back is being constantly told, you must start early intervention immediately, attend all of your appointments and was given emergency contact phone numbers. I was in a panic somewhat as I was trying to get things organized, but everyone had just shut down for the Christmas Breaks.

In the next couple of weeks that followed I was very emotional. Some friends at the time, who weren’t so close back then came for a visit. Peita told me about her gorgeous nephew, and all about Mater Dei, which was a special school in the area. I felt so relieved to have a friend who I could relate too and that could understand how anxious I was about Eve’s future but also made me feel so at ease.

Over the next few months, we had many appointments. Her hearing test at Randwick Children’s hospital came back that Eve had bilateral, moderate sensorial hearing loss. Within a matter of weeks, Eve was fitted with her first set of hearing aids. We also had a heart specialist appointment. I got the news that Eve had two holes in her heart and also narrowing of the left and right pulmonary artery. I was told if the holes hadn’t closed by the time she was four she would need surgery, and if the arteries hadn’t widened, she would need stents to help improve flow.

Word’s can’t express the emotions I felt.

At this point, it just felt like one thing after another kept on getting piled on her medical list.

The next appointment was with a Bowel Specialist that we got referred to by the Paediatrician, as Eve’s bowels weren’t working correctly. She is now on daily dosages of medicine to help her regulate them, but also I have found out she has Bowel Distortion and dislocation. Thankfully Eve does not have the hirsh sprungs disease, which is a common bowel disease with our precious children.

Over the next few months, I noticed Eve was having more problems with her hearing. Our ENT was a fantastic support. He ended up doing grommets and adenoids at the age of one. It was then I found out as suspected, that Eve had further hearing loss. I had to get her aids further adjusted. We ended up needing to see an ongoing ENT and throat specialist in the City. When Eve was around 4 months of age. We started our first lot of Early intervention. This was with Mater Dei’s therapists doing

Occupational therapy and speech therapy. It was only then that I began to meet a lot of other parents in similar situations. It made me feel more human. I remember one special lady in particular, who took the time to welcome us and hear our story. I also learnt she had an older boy named Max at school at Mater Dei who had Down Syndrome. I felt a connection finally with someone who had understood. We talked and cried for quite some time. But from that point, I felt like I wasn’t alone anymore and my children and I had been blessed to be joining a whole new community of people.

Not long after that, I found out about The Right Start foundation. I finally met up with some mums whilst attending KU Children’s Services, which is a playgroup for kids with special needs. I can’t explain how “normal” I then felt. Exchanging stories with other parent’s who were in similar situations. You ladies and some men have been an amazing support to me, as well as The Right Start Foundation and KU Children’s services and for that, I will be forever grateful. Being a single parent can be challenging but having friends and support certainly helps.

There are so many things to list that have occurred medical wise for Eve, and it would be well over 10 pages for me to write. In a brief overview, Eve has ongoing issues, which will never go away. Such as Now profound bilateral hearing loss (with 2 cochlear implants), moderate vision loss with poor depth perception, Cortical Vision Impairment with Simultagnosia, a diagnosis of Autism and various sensory issues associated with it, hydrocephalus, severe reflux, GORD, her previous heart conditions resolved, but now they have found out she has mitral valve prolapse with regurgitation and cleft and PDA, laryngomalacia, cobblestones, low tone epiglottis, Ehlers Danlos Syndrome, Bowel Colectomy and sleep apnoea. There are others I don’t wish to list. We are currently awaiting surgery dates for at least two more surgeries this year, being 2018.

Eve is tube fed 23 hours a day due to her ongoing gut and bowel issues and requires a lot of care. She also needs daily bowel flush-outs. The NDIS is now in effect but has so far failed us. We are currently pending another review which hopefully has a better outcome for Eve and more support.

Please don’t think all kids with Down Syndrome have the same health issues as Eve as they do not. Eve has just been dealt with many cards sadly on the severe end of the scale. I would give anything to take away her medical issues and just have Eve as Eve with Down Syndrome. It would be perfect, but I love her no less and I just deal with each day as it comes and tackling each new issue head-on.

One thing I can say about my precious princess Eve is that with at least 25+ surgeries she’s gone through and 47+ anesthetics to date, she always manages to be as happy as she can and has a smile on her face. Her courage, love and strength is what helps me through all the difficulties we face, but soon enough, with all the medical issues out of her way hopefully, we can get great results from her fabulous therapists.

I sit here now in tears thinking of how much my princess has gone through. It’s amazing how you get the courage to just deal with one day at a time. But in no way shape or form would I have my princess any other way. She has opened up a whole new level of friendship, love and understanding to me and help me become a better person and do what is best for us, her brothers and I as a family.

I would like to thank all my Right Start friends and their families for their support, knowledge and encouragement. I would also like to thank my family and friends, in particular, my amazing parents and an amazing couple Peita and Damien for all their love and support throughout everything. Just having someone at the end of that phone sometimes really helps.

So please, if your pending a diagnosis, or have received it, take your time to grieve, it’s only natural but please don’t be scared.

A beautiful, loving and nourishing journey awaits you.

I am more than happy to be contacted through the foundation if you wish to have someone to chat too.

Jenelle Van Look