Harper’s story

Told by her mother Ellie

On 24th May 2019, we welcomed our beautiful baby girl Harper Sophie Dottie Hall into the world, weighing a tiny 6 lbs 15 oz she was perfect. We had found out at our 20-week scan in January 2019 that Harper had a congenital heart defect called Tetralogy of Fallot’s but we were also told that, after numerous repair operations over the years, our little girl would live a happy and normal life.

Straight after her birth Harper was taken to the neonatal intensive care unit and this was where she remained until she was transferred to Birmingham Children’s Hospital at two days old.  On 30th May 2019, Harper was placed under general aesthetic to enable the cardiologists and surgeons to get good quality images of the anatomy of her 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 a cardiac catheter procedure, where a balloon would be placed and dilated into Harper’s arteries to try and inflate her pulmonary artery.

On 10th June 2019, we took Harper into the anaesthetic room and held her hands while she was placed under general anaesthetic. The next five hours were spent pacing up and down the corridors of the hospital, as we anxiously waited to hear how our tiny 17-day old daughter’s surgery was going.

At the sixth hour we were told that the cardiologist was on his way to discuss the events that had happened in theatre.  He told us that Harper was in intensive care and was being sedated and ventilated. He explained that this was necessary because, during the procedure, the cardiac catheter had pierced an artery causing fluid to build up inside the pericardium area of Harper’s heart.

Over the next few hours, to our sheer 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 gradually improved and was getting stronger by the day. On one of the daily ward-rounds, with all the different medical teams, it was decided that Harper would benefit from open-heart surgery to fit a patch on her pulmonary artery, in the hope that this would increase the blood flow through her heart. Like any major surgery, this came with risks but we agreed, after some discussion, that to give Harper a fighting chance of survival, the operation should go ahead.

On 13th June 2019, the operation took place. This time we had a gruelling seven -hour wait until Harper was finally back from theatre. We were told everything had gone to plan and the blood flow through Harper’s heart had improved. Harper’s sternum and skin were open because 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.

We were so relieved, now we could concentrate on getting our little girl fighting fit and home with her Mummy, Daddy and two big brothers, Alfie and Archie, or so we thought…

Over the next few days, Harper was slowly weaned off 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 – we were amazed. In the early afternoon of the 18th June 2019, Harper had her sternum and skin closed and was taken off the ventilator. Nick decided that it was the perfect time to allow Alfie and Archie to see their baby sister as they had only seen her once before. I was overwhelmed that 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 we had finished our meal. We all went upstairs into the parent accommodation, to make something for the boys to eat. Nick immediately sent family and friends a video of Harper without the ventilation tubes and nobody could believe how well she looked considering, five days earlier, she’d had major open-heart surgery.

Just as Nick had finished speaking to his mother 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 into intensive care. Nothing could have ever prepared him for what he was about to witness.

There were two people around Harper’s bed and a nurse was performing CPR on Harper, the red button was pressed and every member of staff on the ward ran to Harper’s bedside. Nick stood there amongst everything. He saw a surgeon cut open Harper’s chest and start to perform cardiac massage.

Nick rang me and told me to come downstairs immediately as we were losing Harper. But before I had time to set off, Nick came upstairs to the boys and me and told me to get down to Harper asap. With that, I ran down the stairs and through the doors into intensive care. “What was going on?” Screens were placed around Harper and the machines were making a continuous bleeping sound, the ward had been turned into an operating theatre. A nurse grabbed me and was holding me up just as Nick walked back in. Two chairs were placed in front of the screens and we were told to wait there until someone had some news for us.

After half an hour a nurse came to us and told us that we should kiss Harper goodbye and tell her that we love her.

We did 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.

Ten minutes later as we were about to go back inside, a member of the domestic staff from intensive care came running over and told us to get back to intensive care immediately. We returned to the ward unaware of what situation we would face. Surgeons, Doctors and Nurses were leaving the intensive care unit as we arrived.

A surgeon stopped and informed us that Harper had been in cardiac arrest for 55 minutes. That was 55 minutes of Harper’s heart not beating for itself, 55 minutes of Harper not breathing. We automatically thought the worst and that we had lost our little girl; but the Surgeon told us that Harper was still there. They had managed to get her onto the ECLS machine, 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 would we ever get our heads around that?

Family members came and picked the boys up and took them home, 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 eight days, the medical staff attempted to wean Harper off the ECLS machine but unfortunately none of the attempts were successful.

On 23rd June 2019, it was decided that Harper should go back into theatre for further open-heart surgery. The surgery came with massive 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 was 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 the ECLS by fitting a small conduit tube from Harper’s right ventricle to her pulmonary artery. Harper went down to theatre and Nick and I decided that we should come away from the hospital for a while, so we went home.

After eight hours Nick received a phone call to say that Harper had successfully been taken off the ECLS machine and was doing well. We were ecstatic, maybe things might start to take a turn in the right direction. We made our way back to Birmingham Children’s Hospital and into intensive care. Shortly after we arrived Harper returned from theatre, she was still heavily sedated and ventilated but there was no ECLS machine attached to her. I stayed at Harper’s bedside all night.

Over the next three weeks Harper started to get better and better. On 3rd July 2019, Alfie and Archie 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 the Doctors were so pleased with Harper’s progress. Nick and I kissed Harper on her head and said goodnight and told her that we would see her in the morning.

We all left the hospital at 18:37 pm and made the half hour journey home. At 19:07 pm, I rang intensive care and spoke to the Nurse who was taking care of Harper, I was told that everything was stable, to get some rest and that they would see us in the morning.

At 21:02 pm, 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 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 ten minutes and we made our way back to the hospital.

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 11:40 pm Harper had the tubes and wires removed and I held her close to me. At 00:10 am on Thursday 4th July 2019, Harper peacefully slipped away in my arms with her Daddy at her side.

Nick and I are planning on doing a charity bike ride on Saturday 1st August 2020 to raise funds for The Children’s Heart Federation. This will help other children with heart conditions and will help other families who may be going through a similar situation to the one we faced when Harper was ill. It will also enable us to do something to ensure that Harper’s memory lives on.

The route we are planning to take is 875 miles. We will start at John O’Groats in Scotland and finish at Land’s End in Cornwall raising money along the way. Lands End is where we first announced that I was pregnant by having it put onto the signpost there and having a picture taken. We vowed that we would go to John O’Groats as a family and recreate the same picture but as a family of five, we sadly never made it.

This is for you Harper!

Any donations would be greatly appreciated in helping us both achieve our goal.

https://www.justgiving.com/fundraising/harpersbows

https://www.facebook.com/groups/886085021785890/