Tonight we are sharing with you one of our trustees experiences of how her and her family have dealt with their own bereavements. 

They are a very brave family to be able to share such personal and difficult times in their lives. 

Talking and sharing our experiences can be a good way of beginning to understand and cope with our grief.

Dawn's Story

In 2002 I gave birth to my second child Charlotte, I was delighted when I found out I was having a girl!

My pregnancy went well but as my first born Lewis was premature I expected Charlotte would be too. 

At 32 weeks my little girl arrived.

She appeared fine but then within 24 hours she had a pulmonary haemorrhage due to her blood not clotting and was heavily sedated and put on a ventilator. We were all puzzled as to what had gone wrong and it was about day 7 until a diagnosis of liver failure was found. 

After a long battle Charlotte passed away in our arms at 14 days old.

It felt like my world had fallen apart. Nobody can ever be prepared for the pain of losing a child.

On the evening Charlotte passed I remember walking out the hospital with just a blanket and a handful of leaflets feeling numb.

Apart from a routine visit from my GP I felt there was no professional support. 

I’d never even been to a funeral let alone organise my own baby's. I had a 3 yr old boy to look after who kept me going and a purpose to carry on.

We never got a reason for Charlotte's death except liver failure but as we wouldn’t agree to a post mortem there wasn’t a medical reason.

Several months past and I found out I was pregnant again. 

We were delighted but very nervous. I was monitored very closely but at 36 weeks my baby girl Sophie arrived, she was perfect and healthy and helped comfort those empty feelings and dark days.

2008 I gave birth to another girl Ruby Isabelle, I always had a niggle that she would need tests and monitoring but I was reassured by the doctors that I had 2 healthy children and not to worry. Shortly after birth Ruby had her routine bloods done. Her blood sugars were extremely low. They took her the neonatal unit and started to do further tests. Within 24 hours Ruby’s clotting levels were low and our heart sank when they told us Ruby was very ill. They were pretty confident the results indicated there were medical issue that Charlotte had when she was born.

We were truly devastated how can life be so cruel. The doctors knew there had to be a medical reason not just bad luck. To have 2 babies presenting liver failure must be caused by something else. The obvious condition to them was something called Neonatal Haemochromotosis. This is a very rare condition but with the little knowledge known about it they tried their best to keep Ruby alive and treat her with various drugs and blood products.

On day 4 Ruby deteriorated quickly and we had to make the heart wrenching decision to take her off life support.

Having been through the pain already didn’t make it any easier, in fact it made it worse knowing how difficult the journey ahead was going to be. Once again I had to walk away with yet more leaflets, a blanket and a broken heart in the cold night sky.

Hours felt like days and weeks felt like months, I had Lewis and Sophie at home and telling them their baby sister had gone to heaven was the hardest thing I’ve ever had to do. Through my own pain I had to comfort them too.

We agreed to a part post mortem for Ruby to give us some answers. The results were clear cut, Neonatal Haemochromotosis was the reason my babies were taken from me. It is a very rare disease that happens during pregnancy when the mother develops an antibody that causes a buildup of iron in the baby’s liver and other organs. After the index case it is an 80-90% chance of recurrence and the survival rate is very poor.

We know now that Sophie really was a miracle! 

The liver consultant told us that a doctor in America had done a lot of research on the disease and found a preventative treatment during pregnancy. I needed to know more about this and began to have contact with the doctor in America.

I had to give it a go! 

Everyone thought I was crazy but I needed to try the treatment I wanted to bring home a healthy baby. I felt a lot of guilt that my body had caused the death of my baby girls. I felt having a successful treatment I would be giving other families hope and I was doing it in the memory of Charlotte and Ruby.

In December 2009 I had a miscarriage at 9 weeks and a couple of chemical pregnancy’s following that. I didn’t know if I could take much more heart ache but I did fall pregnant again and began my treatment which meant sitting on a drip 11 hours every Thursday for 20 weeks! It felt like a massive mountain to climb and a very difficult journey as I didn’t really know what the outcome was going to be.

There had only been 1 other lady in the UK who had gone through the treatment but it was successful.

10th September 2010 my precious Hannah arrived after a planned delivery, it was nerve wracking waiting for her blood result but miraculously she was fine! the treatment had worked. She had some scarring on her liver but after 11 days we brought home Hannah Faye healthy and a little miracle.

As a family we had been through so much and years of heartache.

I always wanted to help other families but didn’t know where to start. I openly talked about my girls to people and kept their memory alive. 

About 18 months ago I came across Charlies-Angels and could relate to their mission to put better after care in place. Their story about Charlie touched my heart and I began to attend fundraising events and having contact with Sam and Clive.

The work they have done and are continuing to do is amazing and I wanted to help them make a difference so I became a trustee. 

Helping other families who are feeling the pain I have felt gives me comfort and helps me cope.