About Amy
Amy was born with a Congenital Heart defect known as Hypoplastic left heart syndrome (HLHS). It affects normal blood flow through the heart.
As Amy developed during pregnancy, her left side of her heart did not form correctly.
THE FIRST CHAPTER:
A LETTER FROM MOM
We all know the story about 'the little train that could' – Go up the hill that is!
What we were NOT taught is that the little train’s engine had been serviced and taken care of and was in pristine condition.
Our little angel has only half an engine to drive her up the hill we call life!
My husband and I had an amazing start to 2010; we found out on the 16th January that we were pregnant with our first baby! The whole family was excited to finally have a baby to spoil in the family again!
At a routine scan when I was 20 weeks pregnant, we were told that our baby’s heart was not developing properly and that it would have to be watched closely in the next 5 months. My heart broke into many pieces when at 36 weeks pregnant, whilst in the scan, the now pale cardiologist kept completely quiet throughout the 30 minute scan, the results of the scan were far worse than what was originally thought and our baby would need treatment as soon as she was born.
We then drove from Durban to Joburg, and eventually, bursting at the seams, from Joburg to Cape Town (as I was not allowed to fly) to find the best hospital equipped to deal with broken baby hearts.
Amy was born on the 8/9/10, at 8h48 in the morning, at Christiaan Barnard Memorial Hospital in Cape Town. The first words I remember the doctor saying was: "Baby is struggling" and they put her on my chest to hold for a couple of seconds before rushing her to Neonatal ICU. Her hands were so blue and I was so scared to hold her, I didn’t know if that would be the last time I would hold my baby girl.
My husband went with Amy to the ICU where the cardiologist was waiting to do an echocardiogram on her to assess the extent of her heart problem. The doctor told my husband that it looked like the problem was inoperable and that he didn’t think that there was anything they could do for her… Some excruciating time later, after consulting with a colleague and the surgeon, they decided that they would operate. She was diagnosed with HYPOLPLASTIC LEFT HEART SYNDROME, a condition that if left untreated, is 100% fatal. Even after the doctors decided they could operate, they were not prepared to give me an answer on her chances of surviving her first operation.
Amy Baby had her first open heart surgery when she was 6 days old and her second when she was 4 months old. Those were the longest hours of our lives. Hundreds of kilometres away from your home, no one can prepare you for the feeling of waiting for 8 hours to hear if your baby has made it through surgery and then praying and hoping that she will make it through recovery. She was in hospital for 45 days after her first op, and her second op had to happen a lot sooner than initially hoped as her aorta collapsed and had to be reconstructed. This time however, she surprised everybody by being discharged only 16 days after a 9 hour open heart surgery!
Imagine falling in love with this precious gift and not knowing how much time she has left on this earth…every smile, every giggle and every hug are truly appreciated. Everyday we wake up and thank God for our borrowed time with Amy Baby! And yes, our heart brakes thinking of the worst but we cannot stop this, all we can do is pray for our girly, be the best parents we possibly can, say thanks for all the doctors and nurses, and be grateful for the enormous miracle and blessing that is our little girl.
The little engine that could is now 11 months old…
The uphill race continues…
A LETTER WRITTEN WHEN AMY WAS 11 MONTHS OLD...
3 Surgeries and reversed heart failures later several, we celebrated her 5th birthday. We now put the fate of Amy in your generous hands.
Even through this has been an extremely long journey for Amy, she still remains a happy, feisty blonde, blue eyed girl who loves music and loves life even more.
This is AMY...
A LETTER TO THE CARE GIVERS WHO HAVE TOUCHED AMY’S LIFE:
We cannot thank those who have treated our Amy throughout the years. Each and every step of the way we have encountered really amazing Doctors, nurses and sisters, each of which have both been an inspiration as medical providers but more so as humble caring human beings.
We have walked a long way with you amazing people and you have given us 5 years with a truly special little person and without you we would not be taking the next step to give Amy life.
You have shown us humility and selflessness even when times were tough!
We still have a long road to travel together.
Love
Mike, Tash, Amy and Layla Miller
TO FELLOW PARENTS AND CARE GIVERS:
It’s now up to you to make a decision to give life and to enable the professionals to changes lives.
One cannot express enough the difficulty in asking other parents, who have lost a little angel, to help another ones angel. In death and tragedy there is and can be life.
Whoever reads this, we pray that you will not be the one to have this decision at your feet.
Treasure your kids every day, make their lives special every day and give them the love they need and then continue to keep loving them more and more every day and every hour; never stop, EVER!
If this call to action has done nothing else, let it be the catalyst to be a better parent and love more.
Thank you.
Mike and Tash Miller
