My story actually starts in 1972, when my husband was a patient of Great Ormond Street Hospital as a few day old baby. And through their expertise, even 40 years ago, they have done an amazing job.

My personnal story.............................. Great Ormond Street Hospital  became a major part of my life 5 years ago. I had my beautiful Tanyaradzwa in October 2008. My beautiful girl weighed a tiny 5lb 15oz when she was born. Everyone who saw her thought she looked like a little doll. She was perfect.

At 13 days old something didn't seem right. A mothers intuition kicked in. She wouldn't settle and she had gone off her milk and she loved her milk. I just felt that something wasn't right. So we contacted the off duty doctor and arranged to go down to the hospital. When we arrived at the hospital, after a tense wait we were seen by the doctor who decided to refer us to the Childrens ward. This is when our lives suddenly took a turn. They did blood tests and took Tanyaradzwa's saturation levels and these were the lowest they had ever seen. But she wasn't blue or anything like that, she looked as healthy as ever.

From there it was a blurr of doctors, nurses, etc. Tanyaradzwa was put on a ventilator to help her breathe and to bring up her oxygen levels. So this had gone from nothing and escalated to almost loosing my baby. The hospital contacted Great Ormond Street Hospital and they arranged for the critical care team to come and assess her and transport her to the hospital. During all of this the radio was on in the background, and for a couple to minutes it felt like the world stopped around me and I heard The Script 'The man who can't be moved' and just as quickly as it finished the world came off pause.

Another amazing organisation C.A.T.S came to assess Tanyaradzwa and we were told that her condition was life threatening but she was now stable but had to be transported to hospital as quickly as possible. We were airlift to Great Ormand Street Hospital by The RAF Sea King. We landed in Regent Square where we were met by a police escort and ambulance to transport us the rest of the way to Great Ormond Street.

We were called into a small room with a doctor and a nurse after Tanyaradzwa had been settled into CICU. They had diagnosed her as having pulmonary atresia and a VSD, which means one of the ducts that should have closed when she was born was only shutting now which would have been fatal.

Tanyaradzwa was fitted with a shunt and seven days later we were discharged, with information that we would need to be back for another operation in the next few months. On the final part of our stay at Great Ormond Street Hospital we were placed in a family room where I could stay by her side. Through out the visit we had been staying in the hospital accomodation which meant that we did not have to travel back and forth to be with Tanyaradzwa. This cost the Charity £50 a night for the upkeep if the rooms. We were booked for 6 weekly check ups until her next operation was scheduled.

Tanyaradzwa went back into hospital in May 2008 to have more repairs carried out on her heart. They closed the hole in her heart and removed the shunt. It meant that they had to remove the valve in her heart. So even after all of that we are expecting to be in patients at Great Ormond Street Hospital to finish the repairs on her heart but at the moment we are lucky to have our princess fit and well.

Many would end their stories here, but mine continues. In Feb 2011 we had our handsome baby boy. Haden. His story ...................................

Due to our history with Tanyaradzwa the hospital were extra vigilant at my scans. During our 12 week scan the Sonographer found an anomaly, and we were refered to the head Obstertrician. We went straight down to have our scan carried out and straight away she said that there was an anomally with baby's heart and that she would refer us to Evalina for our 21 week scan.

We were set for scans every four weeks at the local clinic so that she could keep and eye on the baby. She told us it was that his heart wasn't forming properly.

We went for our scan at Evalina, already knowing that there was an issue. But I must admit that I was not prepared for what I was going to be told. After our scan we were called into a small room with a nurse to discuss the findings. Haden was diagnosed with HPLH a condition that meant that one chamber of his heart hadn't formed properly and therefore was preventing the proper growth of the rest of his heart.

The doctor told us that it was unlikely that I would carry the baby to term. And I was given the option to terminate at that point as i had not reached 24 weeks yet. He went on to tell us that Haden would spend a lot of his life, if the pregnancy came to term having corrective surgery on his heart but that at some point he would require a heart transplant and that at that time the mortality rate for this conditon was about 34 because the oldest person who was living and had had this conditon and then a bypass was currently that age.

I had felt amazing guilt throughout this pregnancy as I feared loving this baby that we might loose. And I could feel myself detatching completely from the little person growing inside me. The guilt haunts me to this day. Would things have been different if I had loved him more?

Haden was born. He was to be an amazing little man who touched so may lives in such amazing ways for someone who was with us for such a short time.

He was not going to wait for time or man because, my angel decided that he would arrive on the 28th of Feb 2011 and I know that if it had been a leap year he would have waited until the 29th. He entered our world at 11.39 on the living room floor, just me and him. The paramedics arrived to finish the delivery. He was a large boy weighing 6lb 3oz. Haden Courtney Bickley.

We were taken to our local hospital were we were transported to Great Ormond Street Hospital. A little less dramatic that Tanyaradzwa, in the back of a ambulance. Haden had his first operation at a few days old. He started to retain water and his heart was not working as they would have liked so they opened his chest so they could relieve the pressure on his heart and they could intervine if needed.

It took us 4+ weeks to get to the main ward. By this point Peter had to go back to work and we had been making trips home on the weekend to see Tanyaradzwa who was staying with my parents. I can't imagine how, or what she was feeling. Finally she made the trip to London to meet her baby brother and she has the picture of their first cuddle in pride of place in her bedroom.

Haden came home with an NG tube which means he was feed mainly by tube but we were using a bottle to try and teach him to suck. It was difficult caring for my Haden I must admit, there was a lot to do for him but he was such a good natured baby and I had my mum who supported me through all. On the 10th of April, the sun shone so beautifully and my family had a lovely day together sat in the garden. I took pictures of both my babies. But that was to be the worst day of my life.

After putting Tanyaradzwa to bed and getting ready to go up ourselves Haden seemed distressed and finding it difficult to catch his breath. We called an ambulance and I preformed CPR on my angel in the front room. The paramedics arrived but .........................

We arrived at the hospital and were shown into a waiting room, we were taken into resus shortly after this and watched as the doctors fought for Haden's life. The moment I was dreading came when the doctor looked over and they all stopped, and he said, 'I'm sorry'.

I held my baby after that. He was still warm and I did't want to let go. We had him Christened that night. Maybe if I had loved him more, he would have made it. He was my baby. Our angel. We send kisses to our angel and Tanyaradzwa always makes sure that she counts him when we count our family and he gets a lot of goodnight kisses blown. We try to talk about Haden and we go to the cemetary. Tanyaradzwa I think understands now. She will say things like lets get flowers for the cemetary.

The end..........................................

No, not the end. We were luck to fall pregnant with Isaac. As before they kept under particular attention. But what's the chance of having 3 children with heart conditons?

Surprise........................................3 out of 3

Isaac was diagnosed with Tatrology of Fallot at his 21 week scan at Evalina. We had more indepth scans on him to make sure that he had no other conditions, because heart conditions are generally associated with other syndromes.

Isaac was born on the 24th of Feb 2012 weigh 5lb 14oz. Little man struggled to put on weight and for 3 months to his operation he was on a Nastal Gastric tube(NG), which he managed to pull out many times ,and breastfed. We were admitted to hospital to try and encourage his weight gain. He eventually put on the right amount of weight and his operation was scheduled. We all went this time and ended up staying in a house belonging to The Sick Children's Trust who make sure that families can live close to the hospital. We were not to be separated again and Tanyaradzwa was to be with us throughout.

We left Great Ormond Street Hospital 7 days after his operation.

We currently go to Great Ormond Street once a year for cardiac appointments and Isaac visits every 6 months as he has Coloboma which is a retinal condition, so they are monitoring his sight.

Great Ormond Street Hospital is an amazing place, that holds great memories and a place I would rather not have to frequent.

Please help me help other familes see their children grow up.

Haden would have been 3 in February 2014.

 

 

 

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