We just kept thinking surely that is the last, big medical condition Zack will have to deal with
Owen: My partner Libby and I were looking forward to the arrival of our first baby, experiencing all the excitement and nerves of becoming parents for the first time. Around 37 weeks into our pregnancy, Libby started to have bad cramps and pain in her back which we thought might be contractions. We phoned the hospital for advice and they too believed it was most likely contractions, but we were told to stay at home and monitor them. However, the cramps were as intense in the following morning, with Libby being in constant pain.
We were getting more anxious about the situation, which increased further when Libby thought she couldn’t feel the baby moving anymore. We weren’t sure if Libby’s pain was masking the baby’s movements or if something else was going on. We phoned Hull hospital again who told us to come in, just to be on safe side. We didn’t think much of it at the time, believing it would just be like a regular check-up. As Libby went in to be examined, I had to wait in the corridor because of the rules around covid.
Libby: The doctor was giving me all the regular checks, and everything seemed fine. That was until he went to look at our baby’s heart. Shortly after connecting us to the heartbeat monitor, the doctor became very concerned. He couldn’t tell enough from the scan but said that our baby son – who we named Zack – needed to be born now as his condition was critical. It was all very surreal. I didn’t really know how to react or what was happening. There was a lot of activity as doctors and nurses prepped me for an emergency caesarean section.
Owen: A nurse rushed over asking if I was Libby’s partner, explaining she was going immediately into theatre for a caesarean. I followed her into the room and found Libby surrounded by medical staff. We were both in complete shock. We thought we’d be in and out of the hospital quickly, but suddenly our baby was coming. I got gowned up while they prepped Libby and, before we knew it, we were in the operating theatre. Libby could still feel some of the prick tests they were doing, meaning the anaesthetic hadn’t fully kicked in. Normally they would wait until all feeling had gone before continuing, but the doctor said we simply couldn’t wait any longer. Zack needed to be born now.
Libby: It was really scary. You imagine giving birth as such a joyous time, getting to meet your baby for the first time and revelling in becoming parents. For us, that was replaced by sheer panic. It wasn’t the experience we were expecting at all, but you put your trust in the doctors. They knew something wasn’t right and Zack needed to be born to give him the best possible chance, so your mind stops thinking about anything else. You just hope that your baby will be okay.
The surgery was very quick. From arriving at the hospital to Zack being born, it was only 30 minutes so we barely had time to process anything. Zack was quickly lifted so we could both see him, very briefly, before he was placed on the weighing scales. At the same time the doctor said we’d done well to realise something wasn’t right. If we had waited any longer, he might not have made it.
Owen: That was a completely shocking thing to hear. We appreciated the doctor being honest so we knew the situation we were in, but that is not what you expect to hear just moments after your son is born. I went to see Zack and I could see that his left arm didn’t look right. It was really bruised and blistered, but he was here and that was the main thing. I took a quick picture of him before he was whisked away for treatment. Libby didn’t even get to hold him, which was heart breaking.
As Libby was moved onto the ward, I stayed with her while we waited for news about Zack. We didn’t know what was going on, what might be wrong or what treatment he might be having. It wasn’t until five hours later that a nurse came to see us and tell us that Zack had a blood clot in his arm which had caused the damage. He needed specialist treatment at Leeds Children’s Hospital, and they were arranging for us to be transferred there. We went to see him in his incubator and touched him through the plastic openings, but we were unable to hold him.
While arrangements were made for EMBRACE, the specialised ambulance service that transports critically ill infants and children, to take him to Leeds, we spoke with the doctors about what might happen. We were all over the place. It was a joy to see him, but we were so worried about what was going to happen next. It was hard to see him covered in so many wires and tubes.
I then had to decide whether to go with Zack to Leeds or stay with Libby, who was unable to travel while she recovered from the surgery. It was an incredibly hard choice. We didn’t want Zack to be alone but, because of covid, I wouldn’t be able to stay at the hospital with him either. I didn’t have anywhere to stay in Leeds either. We made the decision that I would stay with Libby and we would both go to Leeds together the following day.
Zack left about 8.30pm but it wasn’t until about 2am that we heard from the nurse at Leeds who said that Zack had been admitted to the neonatal intensive care unit (NICU) and was undergoing treatment. Libby was discharged the next day and we drove over to Leeds. That was very daunting as it’s a big city and the hospital is huge. Not having any idea where to go made locating the ward quite stressful.
After Libby was admitted so she could recover and be close to Zack, we spoke with the consultant. They told us that the blood clot in Zack’s arm had caused too much damage and it was likely that Zack would need to have it amputated. As he was too small to operate on and the risk of surgery was too high, amputation would be the better option as it was causing Zack a lot of pain. We had barely seen him and still hadn’t even held him, so this was devastating to hear. We went to see Zack and, 30 hours after he was born, we were finally able to have our first hold.
Libby: It was really emotional, holding Zack for first time. I felt so much joy at finally being able to see our little boy, but at the same time it was a strange situation to be in. He was still covered in wires and we had to be really careful of his arm while holding him. We didn’t have that normal labour experience and it felt like we had been robbed of it. You see people on social media with lovely family pictures when the child has just been born, holding them and everyone being together, but we didn’t have that for so long. This of course wasn’t how we planned it at all – it was a lot to come to terms with. We had a few hours with Zack before I returned to the ward and Owen had to leave the hospital.
Owen: I couldn’t stay with Libby or Zack and there were no family rooms available at the hospital. I was completely on my own in a strange place, which was really quite scary. I booked into a hotel for the night but had nothing with me, we had only packed a bag for Libby thinking our initial check-up wouldn’t take that long. However, the following day the nurses mentioned they had arranged for me to stay with The Sick Children’s Trust at Eckersley House.
The charity provides families with a ‘Home from Home’ close to the hospital, a place to stay just minutes from their child, completely free of charge. We were overwhelmed with the generosity we were receiving and couldn’t be more grateful for having a place to stay. Our little boy was going through so much and we just needed to be close to him. Libby was also able to stay there after she had been discharged, which was amazing. There’s no way we could have afforded a hotel for the length of time he was in hospital, and the commute wasn’t an option either. When your child is that critical it feels like a million miles away, but Eckersley House took all those concerns away.
Zack was in intensive care for about five days and his arm continued to deteriorate. It was starting to die with the skin blistering and causing Zack a lot of pain. The decision was made for Zack to have his arm amputated. While the surgery was successful, we were dealt another blow during his recovery. Zack underwent a MRI scan to monitor his brain activity where they discovered that in addition to the clot in his arm he also had a blood clot in his brain. They suspect that he suffered a stroke while in the womb which has caused damage to his brain. We won’t know the extent of the damage until he is older, but it could prevent him from walking, being able control of his muscles, or even speaking. It was another big blow which was then followed by him failing his hearing test. It was too much to take. He’d just had surgery on his arm, and now we were being told that he might never walk or even be able to have a conversation with us. It threw us into a completely different world and gave us more things to process. We just thought, what else is coming? Surely this is last major condition he is going to have?
That’s another thing that made Eckersley House so valuable as we could come away from the ward and process everything in private, in our own room. A place where we didn’t have all the eyes on us, like we had on the ward. We had a quiet room where we could cry, comfort each other and then return to Zack stronger.
With Zack doing a lot better following his amputation he was moved to the high dependency ward, which was great for us. We could come and go a lot more, without so many restrictions. He continued to be monitored until we were finally able to bring him home, and he’s been doing really well since then. Subsequent tests have revealed that his hearing loss is only mild and while he is behind with his development this is something to be expected. We did need to return to hospital in December as he was having seizures which is linked to epilepsy, but this was treated with medication. Zack will still need lots of check-ups as he reaches big milestones, but he’s doing brilliantly. He’s always smiling and we’re enjoying time together as family.
We can’t thank The Sick Children’s Trust enough for their support. We wanted to give something back so me, Libby and nine of our friends are taking on the Yorkshire marathon. The two of us have never been runners and this will be our first long distance run, so we know it’s going to be incredibly hard. Zack has had to overcome so many challenges in his very short life so we wanted a really tough challenge to replicate just a fraction of what he has been through. Knowing that we’re doing it for Zack and for such a great cause will definitely get us over the line.
When eight year old Olly Brooks went from running a cross country race to being on a ventilator in hospital in just 24 hours, our Eckersley House 'Home from Home' kept Helen and Tim close to their son during his treatment for heart failure
Born in 2012 with numerous cardiac complications that may never be resolved, Lucas Whitworth has undergone various heart surgeries at Leeds Children's Hospital. Mum Melissa Petrillo shares her story about how Eckersley House has supported her down the years.
Every year we help families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.