This is a speech I wrote and the first time I spoke publicly about our journey. I was asked my one of my old teachers to talk in front of 200 mcc students.

Hi, today I am here to tell you about our story. My name is Leigh and I’m 23 years old. I graduated here from MCC in 2009. I first laid eyes on this cute guy josh at New Year’s Eve in 2006 and a year later we started dating. Josh proposed to me in October 2010 and we later married on January 7th 2012.

We decided we wanted to go travelling before we settled down and started a family. So we saved hard for two years and went travelling around America for five weeks at the end of 2013. We spent Christmas in New York and New Year’s in Vegas, a magical trip that rejuvenated our relationship. We decided to start trying for a baby during that trip and six months later I fell pregnant. We found out on a holiday in Bali that our little baby was due 18th February 2015.

Pregnancy was an interesting journey for me, I loved it but I also hated it. We had a few hiccups along the way and looking back now this was probably our first indication that something wasn’t quite right. At 10 weeks we thought we had lost the baby but she pulled through and at 32 weeks I had a big bleed and I was in hospital for 4 days but again our baby was ok. Throughout the pregnancy we learnt our baby was quite small and I had a lot of excess amniotic fluid but was told not to worry. The weeks and days were getting closer to our baby girls due date. We were anxious but so excited to meet her.  I hated being so uncomfortable in the hot weather and I spent most days inside on bed rest towards the end, but the little kicks and movements made the pregnancy worthwhile.

It was Friday 13th February and I really didn’t want the baby to come this day. Its Friday the 13th, unlucky right!! I spent the day walking around Perth with my girlfriends wedding dress shopping. I was almost about to ‘Pop’ as they say! If only it was that easy. At 7pm that night I began active labour and went into hospital at 3am.  At 1.38pm on Saturday 14th February I gave birth to a beautiful baby girl, a small 6lb 3oz she was our perfect valentines baby. Piper Edwards we named her. Her beautiful brown eyes and gazing stare made us fall in love.

The first night at Peel was exhausting. Piper’s temperature had dropped so the nurses took her into the nursery to care for her and we were able to get a little sleep. The next day was filled with lots of visitors so we could introduce this bundle of joy to the world.

I was trying to breastfeed but Piper wouldn’t attach on so we had to then feed her with a syringe. As soon as she was fed any milk she would vomit it straight out of her nose. This was the first time we realised something wasn’t quite right. The Paediatrician and nurses had a look over her and said it was unusual but everything else seemed ok. We are first time parents so we trusted what they were saying, not knowing what was right or normal.

Two days later and the same things were still happening. It was time to weigh Piper and they allow a newborn to loose up to 10 percent of their body weight. Piper had lost 12 percent and this was quite concerning. The Paediatrician witnessed the vomiting and was also now alarmed. Everything started happening really fast from this point and we soon realised this was getting serious. The nurses placed a feeding tube down her nose straight into her stomach to help keep the milk down and in a matter of minutes an ambulance had arrived and we were being transferred to Princess Margaret Hospital, not sure of what was even going on with our beautiful girl.

That arvo was so daunting. We weren’t able to travel with her in the ambulance so we had to say goodbye and left hospital to follow behind her. This was the first, hardest part of our journey. I felt so devastated. This was the day you’re supposed to bring your new baby home but instead we were driving behind the ambulance without our baby to the Neo-natal Intensive Care Unit or NICU. It didn’t feel real.

The first night at PMH was so hard. I could barely walk, I was in so much pain from just giving birth, I was very pale and had hardly any sleep for several days. I didn’t want to leave her but I knew I needed to get some rest. Josh stayed by her bedside for most of the night and slept in the car for a few hours until I arrived back in the morning.

Every time leaving her side from this point forward was so painful and it never got easier. The first time we went home crushed us. Home to an empty house with no crying baby, all these little clothes waiting to be worn, a beautiful painted nursery waiting for our baby to be changed in and the bassinette in our room waiting for our baby to sleep in. Empty. I felt emptiness. Looking to God for strength to get through what is going to be a difficult journey ahead.

The next 2 weeks Piper under went many tests, needles, scans, X-rays, MRI’s and ultrasounds. The Doctor kept telling us that she just has severe reflux but I knew in my heart it was more than that. Every time Piper was being fed she would still vomit and we now realised during these episodes she was losing oxygen to her brain. Nothing was improving. They kept the nasogastric tube known as a NGT down her nose as a way of feeding her.

Piper spent most of the first two weeks in an incubator until she could regulate her own body temperature. This was such a difficult time because we didn’t get to hold her, change her nappy or do all these new things your suppose to do with your new baby. Instead we sat by her bedside, looking in at our little girl hooked up to beeping monitors, with a drip in her tiny little arm. It was absolutely heartbreaking to see.

In another procedure the Ear, Nose and Throat Surgeons put her to sleep to have a look down her nose to see what was causing these problems. They found a Type One Laryngeal Clef, which is basically a hole in your larynx. After doing a bit of research we found that it is very rare, occurring in 1 in 20,000 babies. Later we learnt they had also found a sub-mucous clef, which is a hole in the roof of the mouth. This explained why the milk was coming straight out the nose.

Piper moved to isolation just after, as she had caught a virus from one of the other babies. This was scary for us as she was now in her own room. At first we hated it as before we were able to talk to other parents and be around other babies but now we were all alone, but after a while we learnt to enjoy it.

Piper was not gaining much weight still and the doctors were doing more tests. We thought that now they had found the Clef’s that this would be it and we could deal with it. At five weeks old Piper went into surgery to have the laryngeal clef repaired. Saying goodbye to her before the surgery was extremely sad. Although the Ear, Nose and Throat Surgeons had said it is a simple surgery placing a stitch over the hole, at the same time it is airway surgery and very risky on such a small baby.

We anxiously waited in the parents lounge while Piper had the surgery. The Surgeon came out and said it was successful but she needed help with her breathing, so returned with a machine to help her. Piper’s bright eyes were filled with so much pain, sadness and confusion. It was devastating to see and I could not hold back the tears. It is so much for a little girl to go through at only five weeks old. My little girl, so tiny and fragile. I just wanted to take her home and hold her in my arms, but I couldn’t.

Thinking that now this has been repaired, when she has recovered we can start trying to bottle feed her and teach her how to swallow then bring her home. If only it was that easy.

A Few days after the surgery we entered the NICU unit to visit Piper. The ward was such a sombre place that afternoon. A little baby had unfortunately lost its fight at life. I felt this sickness in my tummy and it really didn’t feel right. Before I knew it the doctor came around to see us to deliver us some devastating news.

The doctor said “I’m so sorry but the genetics test came back positive for DiGeorge Syndrome.” We knew that she was being tested for it but no way in the world did we think she would have it. We didn’t even know what it was. Tears were streaming down my face. I just couldn’t believe it. My heart was pounding and I felt sick. I didn’t understand. It wasn’t fair. Why Piper? Why us? That afternoon was one of the hardest moments of my life. My heart was crushed. We leant over Piper’s cot with tears in our eyes, we laid our hands over her, said a little prayer and told her we are going to give you the best life possible and be the best parents we can be for you.

What is DiGeorge syndrome? DiGeorge is also known as 22q11.2 Deletion Syndrome or Velocardiofacial Syndrome. But we refer to is as 22q. It is a small deletion of chromosome 22. It is present from the time a child is conceived. This made me feel better knowing that it wasn’t my fault. There is only a one to two precent chance of your baby receiving it each pregnancy. We were just unlucky.

Present in 1 out of every 2,000-4,000 live births It is almost as common as Down syndrome. The syndrome has the potential to affect almost every system in the body and can cause a wide range of health problems. Not every person with the syndrome is affected in the same way. The key characteristics include combinations and varying degrees of: heart defects, palate differences, feeding difficulties, immune system deficits, growth delay, kidney problems, hearing loss, low calcium, speech delays, behavioural, emotional, and psychiatric differences like ADHD, autism, anxiety, etc.

After learning that there can be 180 different symptoms that can present themselves, all that went throughmy mind was, “is Piper going to live a normal life? Is she going to be teased? Is she going to look different? Is she going to thrive? Is she going to be ok? How are we going to get through this?”

Piper then underwent many more tests that associate symptoms of 22q. She has been cleared of any heart or kidney abnormalities, which we are so thankful for.

We spent a total of seven weeks in hospital and travelled up and down from Mandurah most days. It was tiring and exhausting. Leaving her at the end of the day was miserable but waking up each morning knowing we get to see our beautiful girl was exciting.

The day came, Good Friday, when we finally got to take our beautiful girl home. A Good Friday it was! What a brilliant moment, putting her in the capsule in the pram pushing her out of the hospital. I was filled with excitement and couldn’t wait to get her home. I was so happy.

This is where the next chapter of our journey started. Piper has now been home for 12 weeks. It has been challenging, draining, frustrating, aggravating but at the same time so beautiful, encouraging and rewarding. The last four months has tested my faith, but it has never been so strong. God has given me so much strength and peace to get through each day. Some days are good and some days are bad, but prayer and God’s love for me and my family has made this journey a little easier.

At this moment in time the issues that Piper is dealing with is that she has throat abnormalities meaning she cannot swallow, she is fed milk through her NG tube on a constant pump for 20 hours a day. She is on heart monitor and has Hyporparathyroidism, which means she has a low PTH level a hormone that controls calcium levels in your body. She has moderate hearing loss and wears a hearing aid. She is very small for her age but is slowly gaining weight as her reflux has improved dramatically. We have a suction machine which we use daily as she cannot swallow most of her saliva. As for the other symptoms we wont know what she will have until she gets a bit bigger, but we take it one day at a time. I think the hardest part for me is knowing I will never be able to bottle-feed her. She will never be able to experience what it is like and I will never get to know how it feels to bond this way with my child. Sometimes I feel ripped off.

We are so thankful for the support we have been receiving and will continue to receive from PMH. It has positively impacted our life in so many different ways. We will continue to be involved with PMH for all of Pipers childhood. PMH supply all our medical supplies, our doctor’s appointments and therapy sessions are all free of charge. We have around the clock care for Piper whenever she needs it. After spending so much time in the NICU unit, I really appreciate all the time, care and effort the doctors and nurses put in to caring for such sick little children, especially for our little Piper.

Telethon plays a huge part in this care. Telethon has been providing funds to PMH since 1983 and has provided more then $16 million in grants. $1.4 million of these funds have been given for the ‘Newborn Hearing Screening Program’. The very test used to identify Piper’s hearing loss. Some of other funds have included funding for intensive care equipment which Piper used while she was in the NICU and mobile X-ray machines for emergency departments among many other vital things to help kids get the best medical care they need.

Why should you support telethon? Because you can know that the money that you donate in your support for telethon is going to such a great cause and is helping families just like ours.

We don’t know what the future holds for Piper. But we know that she is connected with great medical staff and support. We will continue to take it one day at a time and when the next health issue arises we will try to deal with it the best way possible to ensure Piper has a wonderful life.

I will continue to keep my positive attitude and give Piper my unconditional love. Being a Mum is truly the most amazing experience.

The scripture that says, ‘Be thankful in ALL circumstanced for this is God’s will for you who belong to Christ Jesus’, has made me thankful for everyday I have with Piper. I am putting my trust in Jesus and the plan he has for our life, even though some days it’s hard and I want to give up his peace and strength will always get me through.

Philippians 4, 6-7 says, ‘Don’t worry about anything, instead pray about everything. Tell God what you need and thank him for all he has done. Then you will experience Gods Peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus’.

Be thankful for your health and each day, as you never know what is around the corner.

Thanks for listening to my story.