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We never knew such a great charity existed. The Sick Children’s Trust was there for us with no questions asked

News   •   Oct 18, 2017 10:54 BST

Family photo: Parents Elle and Peter with son Zachary

On the afternoon of Wednesday 10 May, we went to James Cook University Hospital as my wife, Elle, was having strong contractions. By the midwife shift change the next morning our baby still hadn’t arrived and it was decided that the best option was to take Elle into theatre and use forceps to deliver the baby.

Unfortunately, our baby was quite happy where he was and didn’t want to come out, so the ventouse was also needed. Baby Zachary arrived at 10pm on Thursday 11 May with a large cone-shaped head where the ventouse had been used, bruising from the forceps and some swelling. Elle and Zachary were sent to the ward to rest and prepare to go home, but due to Elle having a spinal injection during her labour they needed to stay in overnight.

The next morning Zachary’s swelling had moved to around his neck and we could see the concern on the nurse’s face. Before we knew it, he was taken away. We were told it would just be 20 minutes until we could see Zachary. But 90 minutes passed and then we were asked to step into a private room with the neonatal consultant. Zachary had experienced an internal bleed and had lost a lot of blood. They were unsure where the bleed was and how to stop it, so he was getting blood transfusions and various medication. It didn’t feel right that our little boy, who hadn’t been with us for more than a day, was going through all of this – and we couldn’t even be there to hold his hand.

Eventually, we were allowed to see him. In the incubator he looked very pale and you couldn’t see any of his veins. At this point he was the most critical patient in the hospital. He had lost two thirds of his blood and continued bleeding faster than the blood could be transfused in. The signs were not looking good and the consultants didn’t pull any punches when they told us this news. We were told the next 72 hours were critical. And it could go either way.

Around an hour later, the consultant came in with three ladies from the haematology team, who explained that a test, which should’ve taken 48 hours, had been completed in two hours. The test showed that Zachary had haemophilia, which meant that his blood wasn’t clotting.

The doctors were surprised with our positive reaction, they’d never known one like it. But to be honest after hours of not having a clue what was wrong with our son, it was a relief that the doctors knew. And now they knew how to stop the bleeding. Elle described the ladies as angels. She was overjoyed and overcome with emotion. Zachary was given a clotting protein known as factor VIII along with the blood in the hope that the bleeding would stop.

Zachary’s head had swollen a lot by this point and that night he had three heart attacks but miraculously survived them all. His determination to fight for his life continued and, each time we popped in to visit him there was one less tube going into him and eventually he came off the ventilator, which was a big step. We really felt like things were moving forward. Our son was so strong. He had already made a huge impression on the world.

Suddenly we were being told that Zachary needed transferring to the special care baby unit (SCBU) at Newcastle’s Royal Victoria Infirmary (RVI). We were allowed to stay in a flat on SCBU for the first night and were then told we had to hope there was a room in Crawford House, run by The Sick Children’s Trust. Luckily there was. We met Linsey, the Assistant House Manager, who gave us the grand tour and showed us to our room. We were both so grateful and couldn’t believe we were lucky enough to have a bed to sleep in so close to our baby.

We never knew such a great charity existed. The Sick Children’s Trust was there for us with no questions asked. We were taken in and didn’t have to worry about anything, we could just concentrate on helping Zachary get better. This made it so much easier to cope.

Zachary spent eight nights in the RVI and we appreciated that time in Crawford House more than anyone could imagine. In those eight nights many tests and scans were carried out on our son and there was no sign of bleeding on the brain. But it turned out he had severe haemophilia. There was less than 1% of clotting protein in him.

As the week went on, Zachary grew stronger; and we were allowed to do ‘cares’ with him like changing his nappy and feeding him – it really helped being at Crawford House during this time as we were just minutes away from his side. We also had a direct telephone line in our room which meant the medical team could call us and we could be over within an instant to do these all important parent-baby bonding activities.

There is no history of haemophilia in our family, though there is a chance that Elle could be the carrier, and it is believed that Zachary’s cells have mutated, which is very rare.

Zachary is home now and settling in well, although many more hospital trips are planned to both the RVI and James Cook University Hospital. Since we’ve been out of hospital, Zachary’s condition has started to hit home more and more, but we’re just so pleased that there’s something that can be done. Something to help him. Zachary is currently still on heart medication as the reason behind the heart attacks has not yet been discovered. Unfortunately, he has developed a poorly thyroid, due to the heart medication but this is being managed by more medication. He could be on this medication the rest of his life, but he won’t be on the haemophilia treatment until he’s a little older, when he starts exploring and banging into things.

For now, the whole family are just very happy that we can start planning a future together.

Chapter two:

On 15/09/17 whilst we were driving back from Manchester airport where we had just landed for Zachary’s first holiday.Elle noticed Zachary was making some strange noises, we pulled over and Zachary was showing signs of seizures.We rushed him to James Cook hospital, where he had another seizure for 20 minutes.He had a CT scan which confirmed he had a bleed on his brain.

This bleed was spontaneous as he didn’t bump his head.To have his first spontaneous bleed on his brain at only four months old is very rare, so rare that the consultant didn’t believe Elle when she told him we have a poster on our cupboard in the kitchen that says the exact symptoms Zachary was showing could be a bleed on the brain.

Zachary received factor eight treatment again to start clotting his blood, he was put in a medically induced coma and transported up to RVI again, just over three months after he left in May.

Another CT scan that night showed that the bleed had not become much bigger so the plan was to keep Zachary stable in the paediatric intensive care unit (PICU) until they operated in the following days as by then the blood would be thinner and most could be removed. The PICU team allowed us to sleep in the parent’s room that night and the next morning they made contact with Crawford House. The nurse smiled and said that the Crawford House team remembered Zachary and a key would be waiting for us at reception. Elle and I felt good knowing we had a place to stay and we could focus on Zachary.The team at Crawford House welcomed us again but wished there was more of a gap since the last time we stayed at the house.

Sadly in the early hours of the morning we received a call from PICU saying we needed to get there quickly. Zachary had had another seizure and it was decided that the best option was to go for an emergency craniotomy, we said our goodbyes and prayed that it would all go well. In the operation a piece of his skull the size of a 50p coin was removed and as much blood as possible was removed.The operation went well and we were told that our son would continue to be on factor VIII for the next 14 days.

Whilst Zachary was in PICU we bumped into other parents at Crawford House and chatted, talking about similar experiences.By talking to others in similar circumstances it made our situation easier because someone who isn’t going through this could never understand what the bad times are like.In the house the parents all become close and everyone tries to keep each other positive – as on the road to recovery there are always little setbacks.

After days of the doctors trying to get cannulas into Zachary’s arms, legs and even head it was decided jointly by PICU and thehaemophilia team that the best option to get the medication into Zachary long term would be to fit a port under his skin and a line straight to the inlet of his heart. This was done in another operation where Zachary needed to be in a medical induced coma.Again the operation was a success, and soon Zachary was too well for PICU and moved to Ward 1B (a neurologist ward) where he could be closely monitored after his brain operation.Whilst on the ward Elle could stay with him but I still stayed in room 18 of Crawford House. I would stay with Elle and the baby for 17-18 hours a day only going back to the house to sleep.

Again as things were looking up, Zachary decided to throw another spanner in the works by becoming immune to the factor VIII, so it was not working as well as it should.This is rare for a baby his age to become immune and the doctors had to consult with Great Ormond Street Hospital for advice.After days of intense treatment, thankfully Zachary began to overcome the immunity to factor VIII and will now need it every day for the foreseeable future, along with all his other medication.

After almost four weeks we were allowed to take Zachary from RVI back home to Redcar for the second time in under five months.

We hope that we don’t have to use Crawford House in the near future but we know if we ever need it, it’s there and so will be the amazing team who run it.

Thank you so much for the support you have given me and my family again!

Peter Conroy, Zachary’s dad

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