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Ellie Dixon avatar
Ellie Dixon

Harper's Bows

Cycling from John O' Groats to Land's End for Children's Heart Federation because in memory of our Daughter, Harper.

24 %
£2,424.96
raised of £10,000 target
by 167 supporters
Donate

Children's Heart Federation

We inform support and campaign to help families of children with CHD

Charity Registration No. 1120557

Story

On Friday 24th May 2019 at 12:52pm, we welcomed our beautiful baby girl Harper Sophie Dottie Hall into the world via cesarean section. Weighing a tiny 6lbs15oz, she looked perfect. With a mass of dark hair and her Daddy's olive complexion we were both in awe of her. Harper was taken to Birmingham Children's Hospital at 2 days old and we did not know just how seriously ill our newborn daughter was. On 30th May 2019, Harper was placed under general aesthetic to enable the doctors to get good quality images of Harper's Heart. It was at this point that we were told just how serious Harper's condition was.The Cardiologist came to the decision that Harper would benefit from having a cardiac catheter procedure, where a balloon would be placed and dilated into Harper's pulmonary artery to increase the blood flow in her heart. On 10th June 2019, we took Harper into theatre where we stayed until Harper was under the general anesthetic. The next 5 hours we paced up and down the corridors of the hospital, it got to the 6th hour and we were told that the Cardiologist was on his way to discuss the events that had happened. He came up to the ward where we were both sitting at Harper's bedside and asked us to go into a more private area where we could talk. This is when we received the devastating news that Harper's operation was unsuccessful and she was in Intensive Care. Sedated and ventilated. This happened because Harper's arteries were so tiny and fragile that the cardiac catheter pierced an artery causing fluid to build up inside her pericardium. As the hours passed, to our amazement; Harper started to open her eyes and acknowledge her Mummy and Daddy! What a relief we both felt. As the days went on, Harper was gradually improving. On the daily ward-rounds with the various medical staff, it was decided that Harper would benefit from having open heart surgery to have a patch fitted onto her pulmonary artery, in the hope that this would increase the blood flow through Harper's Heart. Like any major surgery, this did not come without it's own risks. After discussing the options that we had been told, we agreed that we should go ahead with the operation and on 13th June 2019, the operation proceeded to take place. After a grueling 7 hours wait, Harper was finally back from theatre and we were told that everything had gone to plan and the blood flow through Harper's heart had improved. Harper's sternum and skin was open on her chest due to the fact that she had just had open heart surgery, but the surgeons told us that they would close Harper's chest over the next few days, when the swelling had decreased. How we were relieved. Now, we could concentrate on getting our little girl fighting fit and home with her Mummy, Daddy and 2 big brothers, Alfie and Archie. Or so we thought. Over the next few days, Harper was slowly weaned off of the sedation and inotropes and she remained stable, and alert. Everything was happening the way that it should. We could not believe the strength and determination that our beautiful baby girl had to keep fighting and improving day by day. In the early afternoon of 18th June 2019, Harper had her sternum and skin closed and was taken off of the ventilator. Nick decided that it was the perfect time to allow the boys to see their baby sister as they had only seen her once before. I was overwhelmed. All of our family were finally going to be together. As Nick walked into Intensive Care, I was sitting in the armchair cuddling Harper. Alfie and Archie were so happy to see their baby sister. Nick said that we should all go and get some dinner and then he would have a cuddle with Harper once finished. We all went upstairs onto parent accommodation, to make something to eat. Within 10 minutes of being upstairs Nick had sent family and friends a video of Harper without the ventilation tubes and nobody could believe how well she looked considering 5 days earlier she had had major open heart surgery. Just as Nick had finished speaking to his Mum, my phone rang. It was Harper's nurse. He explained that Harper had started to show signs that she was struggling with her breathing and the decision had been made to re-ventilate her. Nick ran down the stairs and onto Intensive Care where nothing could ever prepare him for what he was about to witness next. There were 2 people around Harper's bed and one nurse was performing CPR on Harper, within seconds the red button was pressed and every member of staff on the ward, ran to Harper's bedside. Nick was stood there amongst everything. He saw a surgeon cut open Harper's chest and start to perform cardiac massage. Nick immediately rang me and told me to get downstairs quick as we were loosing Harper. Before I could get down there, Nick came back upstairs to where me and the boys were and told me to get down to Harper ASAP. With that I ran down the stairs and through the doors onto intensive care. Nothing could ever prepare me for the sight that I had ran into. Screens were placed around Harper and the machines were making a continuous bleeping sound. What was going on? A nurse grabbed me and was holding me up just as Nick walked back into the ward which had been turned into an operating theatre. 2 chairs were placed in front of the screens and we were both told to wait there until someone had some news for us. Half an hour had passed and a nurse came to us and told us that we should kiss Harper goodbye and tell her that we love her. We done what was advised. Harper was cold. Grey. Lifeless. Nick told the surgeons and doctors to stop what they were doing and let Harper go but they didn't. They carried on working on Harper. Nick made the decision that we should get out of the ward and get some fresh air. As we were walking along the corridor, we both turned to each other and said that we knew Harper had passed away.  10 minutes had passed and we were about to go back inside when a member of the domestic staff from intensive care came running over telling us to get back to intensive care immediately. We done that, unaware of what the situation would be when we arrived back on the ward. The medical team were leaving the unit as we were arriving, but one Surgeon stopped and informed us on the events that had just happened. Harper was in cardiac arrest for 55 minutes. That's 55 minutes of Harper's heart not beating for itself. 55 minutes that Harper was not breathing. We automatically thought the worst and that we had lost our little girl but the Surgeon told us that Harper was still here. They had managed to get her onto the ECLS machine which is a life support machine that takes over the job of the heart and lungs enabling Harper's heart time to rest and recover. We could not believe what we were hearing. How could we be told to kiss our daughter and say goodbye and then an hour and a half later be told that she is still alive? How do we ever get our heads around that? Family members came to pick the boys up and take them home but we sat by Harper's bedside holding her hands and kissing her soft, delicate cheeks. After a few hours Nick went home to get some sleep but I stayed at Harper's bedside all night. Over the course of the next 8 days, the medical staff attempted to wean Harper off ECLS  but unfortunately, none of the attempts were successful. On 23rd June 2019, it was decided by the surgeons that Harper should go back into theatre and have another major open heart surgery. This alone came with huge risks. The main one being a 30-50% chance of death. We both spoke in depth about the options that Harper had and came to a joint decision that the surgery was the only thing left that we could do to give Harper a chance of survival. 24th June 2019, the day of Harper's major operation. We were both sick with nerves, fear and dread. Everything was riding on the medical professionals being able to get Harper off ECLS and fitting a small conduit tube from Harper's Right Ventricle to her Pulmonary Artery. Harper went down to theatre and myself and Nick decided that we should come away from the hospital for a short while, so we went home. 8 hours passed and Nick received a phone call to say that Harper had successfully been taken off ECLS and was doing well. We were ecstatic! Maybe things might be starting to take a turn in the right direction. We made our way back to Birmingham Children's Hospital and onto intensive care, when not long after, Harper returned from theatre. Harper was still heavily sedated and ventilated but there was no ECLS attached to her. We both sat at Harper's bedside for a few hours and Nick decided that he should go home, get Archie and have some sleep. I stayed at Harper's bedside all night. Over the next 3 weeks Harper started to get better and better. On 3rd July 2019, the boys came back to the hospital to visit their little sister. Harper had her skin closed earlier in the day and she was showing huge signs of improvement. I made the decision to go home that night because of how pleased the Doctors were with Harper's progress .Myself and Nick, both kissed Harper on her head and said goodnight and that we would see her in the morning. We all left the hospital at 18:37pm and made the half hour journey home. At 19:07pm, I rang Intensive care and spoke to the Nurse that was taking care of Harper, asked how Harper was doing and was told that everything was stable, get some rest and that they would see us in the morning. At 21:02pm, the phone rang. It was the nurse in charge of intensive care. She said that we needed to get back to the hospital as Harper was really poorly. Her lactic acid levels had increased and her oxygen levels had decreased. Nick rang family members to see if someone could come and have the boys as they were both in bed. Luckily someone was at our house within 10 minutes and we could make our way back to the hospital. Nick drove from our house to the hospital in 10 minutes. We rushed into intensive care and were greeted by the surgeon who had previously operated on Harper. We were told that Harper was dying and that we should make the most of the time that we had with her. We each cuddled Harper and told her how much we loved her. At 11:40pm Harper had the tubes and wires taken out of her and I cuddled her close to me. At 00:10am on Thursday 4th July 2019, Harper peacefully slipped away in my arms with her Daddy at the side of her.

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