There is this place in your heart. A small place that is bursting with love, happiness and the over whelming urge to nurture. You never know this place exists until you have a child.
I discovered this amazing place on the 31/01/2010 when we welcomed our precious baby daughter Mollyjane into the world.
She was a perfect 5lb 7oz and 46.5cm long a little bundle of love that made us a family at last my life was complete.
By that evening the nurses at Newcastle private hospital noticed that Mollyjane was not settling, even after feeding the lovely nurse said she feels a little cold.
"We will take her to the special care nursery and place her under a heat light".
We settled in for a night of rest after my 22 hour labor. We thought our girl was going to be ok however upon further investigation they found not only was her temperature low but her glucose level had dramatically dropped as well. They came to tell me the news and that Mollyjane was spending the night with them and will be placed in a humid crib to keep her nice and warm. The nursing staff were all so lovely and I felt at ease. Little did I know this was just the beginning of Mollyjane’s fight for life.
The next day Mollyjane was seen by her Paediatrician, who administered IV dextrose, as her glucose levels were still unstable.
We were having skin-to-skin contact with Mollyjane but her temperature was still dropping. At this stage she was still breast feeding well and having top up feeds via a syringe.
Over the next 48hours Mollyjane didn’t respond to treatment, although she was still feeding she didn’t get any stronger. On Wednesday morning 02/02/2010 (my dad’s birthday) I said to my mum I had this awful feeling Mollyjane was going to die. She told me to stop being silly but I couldn’t help it. I knew what I felt and it was not good and by the look in my mother’s eyes she knew what I was thinking.
That night at just 3 days old Mollyjane rapidly deteriorated just after I had fed her. She became weak, floppy and non-responsive. I knew this would happen I could just feel it. An emergency call was made to the John Hunter Hospital neonatal crash team to come and get her and as we waited our worst nightmare happened. Our baby girl arrested.
She was having severe seizures, was barely breathing and her heart rate was dropping by the second. I turned to a beautiful nurse (Meg) trying to find comfort. I asked her please tell me Mollyjane is going to be ok. She held my hands and said "Jess I can’t tell you that. All we can do is pray.
No one knows what’s wrong with her so its touch and go." What were minutes felt like hours till the crash team turned up. I was in full panic mode, my baby was dying and we didn’t know why.
Upon arrival at John Hunter Hospital they ran some blood tests and found that Mollyjane was toxic. Her ammonia levels should have been 40 and they were at 840. Her tiny body was poisoning itself.
Mollyjane had fallen into a coma and her tiny brain had visibly swelled.
Our baby girl was connected to so many machines and monitors we could barely touch her, she had probes under the skin on her head to monitor her seizures and a line in each hand and one foot. Doctors knew Mollyjane most likely had a metabolic condition and that if she had any chance of survival she needed to be transferred to Westmead children’s hospital.
On Thursday morning we were handed our tiny defenseless baby and told to give her big cuddles and say goodbye. I knew they didn’t expect her to make the trip, as I was not allowed to travel with her. With my heart in my mouth and my hands trembling I held my precious angel for what I thought would be the last time “ Mummy loves you my darling” then will all my strength I walked away and left her in the hands of god and the beautiful crash team.
After an anxious 40 min wait, my phone rang.
I didn’t want to answer it but knew I had to. It was the neonatologist from NICU at John Hunter (Dr Glover), who had travelled with Mollyjane. "Hello Mrs Boyson I’m just letting you know that Mollyjane has arrived safely at grace nursery Westmead". I was so relieved all I could manage to do was hold Daniel close and cry.
When we arrived at Westmead grace nursery I was so mentally exhausted I couldn’t bare the doctors. I just wanted to be with my baby girl, hold her tiny hand and tell her mummy is here which I did.
The time finally came when we had to face the doctors. A metabolic specialist, neonatologist and nurse took Daniel and myself into a small room and gave us Mollyjane’s prognosis. Again it wasn’t good. We think Mollyjane has CACT an extremely rare in born error. Stem cells sent to France later confirmed this diagnosis. CACT is an extremely rare inborn error of metabolism that prevents the breaking down of fats and proteins. Consequently this builds up as ammonia and sends them into heart, renal and organ failure. "I’m sorry Mr and Mrs Boyson we know these babies don’t survive and if they do survive past the neonatal period all known cases have passed away by the age of 2 ½ normally after a trivial illness like a common cold, vomiting bug etc. etc."
They told us straight up we needed to think what’s best for Mollyjane, which was to cease all treatment and let her go. How do you say goodbye to a precious baby girl you have known for only 4 days and want to know a life time? As her mummy and daddy we were not leaving that hospital without her so it was time to fight and fight we did.
Over the next 2 weeks Mollyjane had just about every test known to man. We were with her holding her tiny hand and singing 'You are my sunshine' 24 hrs a day. Daniel read her book after book and we prayed for a miracle. Daniel and I spent our first wedding anniversary by Mollyjane's bedside but to us it was the best gift we could have hoped for.
On the 25/02/2010 after a short sleep we returned to a sight we would never forget. Our tiny 5-pound baby girl had tripled in size over night. Every limb was swollen and her tiny eyelids looked bee stung. The look in Daniels eyes broke my heart, I held his hand and said we won’t give up we just have to give her time. Doctors came and confirmed that Mollyjane was in acute heart, renal and liver failure and told us there was nothing more they could do except make her comfortable.
I told them to “SHUT UP” and do all they could for me to get her home. I just wanted 1 day with my baby girl at home. I just wanted normal. I just wanted to wake from this nightmare to a healthy Mollyjane.
The next day doctors came to give us the report on Mollyjane’s MRI that was done earlier that week on her brain, and once again it was devastating news. From Mollyjane's high ammonia level it had caused 75% blackened cortical necrosis (severe brain damage). Doctors told us if Mollyjane was to survive she would never function, walk, talk, eat, smile but that did not deter us. It didn’t matter what she had, she was our baby girl and we were going to look after her. Only God and Mollyjane knew when her time was up and while she was fighting we were fighting.
Mollyjane was put on a prayer chain that circled the world and the father who married Daniel and myself 12 months earlier had come down to be with us and baptise her. On the 10th march with family and friends by her side, we held her tiny hands and with all the information we knew we told her that if she needed to it was ok to slip away to that peaceful place called heaven, but Mollyjane had other plans. A miracle happened. 3 days later she bought herself off the ventilator and seemed to be getting better every day. She had astounded the medical profession around the world. After speaking to us 4 days earlier Mollyjane's doctor heard news of a new formula and medication from overseas that MIGHT, just MIGHT, get her home and they had started to trial her on this 1 day before her baptism. Mollyjane had beaten the odds. Over the next 2 weeks we were taught Mollyjane’s care. We were taught how to put her feeding tube down her nose into her belly, how to do bloods, infant resus and how to use her defibrillator in case of arrest at home. We learnt how to get used to 2nd hrly feeds and medications and signs to look for when Mollyjane was going into catabolic deterioration. We had numerous counseling sessions and told of the emotional, physical, relationship and financial stress that Mollyjane would bring to our life, but all we saw was our perfect miracle that we wanted to get home. On the 4th of April we could finally bring our baby girl home. Doctors explained to us that Mollyjane’s life is extremely precious and we need to take her home and love her. They explained to us that Mollyjane’s medications she is being trialed which she will need every 2-4 hours are imported from overseas, as well as her special milk. But we didn’t care. We have our baby girl and that’s all that matters.
Since we have been home Mollyjane is still astounding doctors around the world. She started private physiotherapy, occupational therapy and classical music therapy at 6 months of age, which dramatically assisted her severe brain damage. Mollyjane has had 47 admissions to hospital over the past 6 years for such things as the common cold, blood infections, RSV and pneumonia, Rotavirus, pneumovirus, whooping cough, Giardia, cardiac arrest, metabolic and catastrophic deterioration, 22 operations and every test known to man. Since Christmas 2011 doctors diagnosed Mollyjane further with immune, endocrine problems, neurological deficits, then in 2012 a condition with her bones. The list seems to never end. Grandma has exhausted every email address to overseas doctors and googled every site to try and find out more about what we can do to assist Mollyjane living a long life and keep defying the odds stacked against her. But even the head metabolic specialist in the world had never dealt with, nor seen a CACT baby live past the age of 2 ½ years. There is just not enough known of this condition. Mollyjane is 1 of only 32 cases in the world since the 1960's with Carnitine Acyl-carnitine translocase deficiency, and the first case in Australia.
Mollyjane's mental development has astounded doctors around the world. She is spoken about at conferences in Berlin, Switzerland, France and across the UK thanks to her wonderful team in Westmead.
Doctors to this day give us no false hope and say Mollyjane could pass away at any time. However, the smile on Mollyjane's face, her fight, determination and the cheekiness in her beautiful eyes tells us a different story.
The hardest thing is knowing we cannot protect her from CACT no matter how hard we work it will always rare its ugly head. My worse fear is losing my baby girl, my best friend my little buddy. Over the past 6 years I have held her hand on so many occasions, cried tears over her face when I thought it was the end. The gut feeling of knowing your daughter could die is a feeling I would never wish upon anyone.
We have learnt to work as a team and to survive the best we can with all that comes with our precious girl. We have learnt not to take life and things for granted and to reach out and help others where we can.
All we can do is hold her hand, fight for her and pray when she is sick. And give her every opportunity in this life, and fill her world with joy and laughter when she is well. We will never know how long we will have our baby girl for.
We owe Mollyjane’s life to her wonderful, dedicated and loving metabolic team and genetics lab at Westmead Children’s Hospital. Without all their research, early testing and diagnosis, and constant trips to medical conference’s around the world (helping Mollyjane and other families with rare metabolic disease), and their constant 24 hr support when Mollyjane is sick, I just don’t know what I would do without them. We believe she wouldn’t be here today without all they do for her. Mollyjane’s Doctor (Dr Bhattacharya) and her dieticians work tirelessly on her medical and nutrition plans to make sure we always have a day to day dietary plan for when she is well, sick and recovering from any illness.
Being one of the least funded medical teams, the metabolic team at Westmead Children’s Hospital have gone above and beyond all measures to source answers from all around the world to get our girl to where she is today. Last year Mollyjane's biggest dream came true with a trip to Disneyland. This year she has reached a major milestone and started Kindergarten. A dream no one ever thought would come true.
We are raising money for this wonderful team so they can continue to help Mollyjane and many more children living with genetic metabolic disease.
We could not have not got Mollyjane to where she is today without the constant support from family, fiends and the community.
From the bottom of our heart we would like to thank everyone for your support, well wishes and prayers.