The Legacy he left: Teddy-Blu’s Story

After losing their baby boy Teddy-Blu to a common childhood illness, Katie and Adam have made it their mission to help prevent other families from experiencing the same trauma

23 weeks pregnant with our third child, I was sitting in the antenatal clinic, waiting for a scan to check if our beautiful, healthy baby had been affected by the slapped cheek virus I had contracted. The midwife had rung me the day before, I was at work, and it was a Wednesday. I wasn’t in a rush to call her back, I had already been given the results of the blood test they had done the week before.

They were testing to see if I was making anti bodies against slapped cheek virus.

I rang Monday as I had been instructed and was told all was fine.

Another midwife rang me Tuesday to give me the results, again she said it was fine. I only just called her back in time because I was irritated they were ringing me again. The midwife sounded a little on edge when I spoke to her, she told me that the lab had called and my bloods were developing anti bodies after all, I had contracted slapped Cheek and now my baby was at risk.

I worked in a school and had come into contact with slapped Cheek. We didn’t know what sex we were having, but decided we would ask today, as it was too tempting. As soon as the consultant showed our baby on the screen, I knew something wasn’t right, he was very big, I pushed it back thinking it was because we wouldn’t normally see them at this gestation. I asked her if she could tell us the sex?

“Sorry, I haven’t got time for that,” came back the response, so we never asked anyone again.

She never said a word after that so I stopped watching the screen and started watching her instead. She mumbled something about it had passed to Baby, but she had an emergency to arrange first.

We sat back in the waiting room, stunned, in disbelief, and confused. It slowly dawned on us that we were the emergency.

An appointment was made for us the next day at Kings Hospital, at the Harris Birth Right Centre. As soon as we stepped in to the centre we were amazed at our surroundings, it didn’t look like the typical NHS hospital. We were taken to a private room and were told it was ours for the day.

Eventually it was explained to us that slapped Cheek (Parvo -Virus B19) had passed over to our baby.

The real danger of this at this stage was that the virus attacks the baby’s bone marrow and stops it being able to make red blood cells (these carry your oxygen supply). We were then told our baby would need to receive an intrauterine blood transfusion. The consultant explained that most babies would typically only need one transfusion, sometimes two.

They made it sound simple, just a needle through my bump into a vein in to the umbilical cord. Things were moving very quickly and we then had to sign a waiver that we agreed to the risks of the procedure.

A very simple piece of paper that in two sentences basically said there was a high risk of the baby’s demise with the transfusion but also not going ahead with it would most certainly mean our once healthy baby had no chance of surviving.

Many blood tests and injections later, my blood type was ordered, I remember seeing the motorcycle that delivered the blood arrive, it was surreal thinking that this was going to save our bubba.

About 3pm we were taken through to the operating room. Everyone had been telling us how lucky we were because we were going to have Professor Nicolides preform our procedure. It turns out he pioneered the treatment and was the best of the best.

He arrived, he explained what was going to happen. I started to cry, not for the first time. I was terrified, nervous about what was going to happen. He told me not to cry, I was one of the lucky ones because there was something they could do.

It didn’t exactly hurt, but it was uncomfortable, the line leaked and I was covered in this new blood. When he had finished the procedure he got up said he had just given our baby another week and left the room. We waited a whole day to see him and he was gone in what felt like a blink of an eye. The midwife sat me up and held my hand as I tried not to cry, not to be scared and to believe this would be ok. They told me I could return to work the following day, but I couldn’t. My bump was so sore and I was emotionally exhausted.

After we got home, I was admitted to our local hospital, I was shaking and terrified our baby had died. The midwives and nurses were amazing, they hooked me up on a heart rate monitor so I could hear his heartbeat and they gave me a private room and told me to sleep. I wasn’t to return to work and whenever they could, a midwife would come and see me, reassure me.

It was my daughter’s 1st birthday party that weekend, they said I could go home, but was on strict bed rest. During this time our families were amazing, they rallied around and made the cake I couldn’t, decorated the house and laid out the food.

Over the following two weeks we made the four hour round trip to Kings hospital another four times. A total of 5 blood transfusions, after each one I was left with hospital stays, because of bleeds, contractions, lack of movement. I had steroids injected and magnesium pumped through my body for hours, all to strengthen our little baby.

Our relationship with the professor grew, initially I was unsure of him, but we actually shared the same sense of humour. He mocked his staff and you could see they had too much respect for him to give anything back.

Every transfusion he placed my hand around his wrist. He moaned about his white shirts getting blood on them and made us laugh with his long analogies on things.

He arrived after a long day of us waiting around he commented that my hair looked a mess! I told him I would have gone to the hairdressers if I’d known how long he’d keep us waiting! It was nice to have some laughter at such a stressful time.

On Friday 2nd June, we had just had the 5th transfusion. By the time we got home it had gone 8pm, the girls were already in bed, we hadn’t seen them for days. We went to bed exhausted and drained.

I woke in the early hours to a fresh bleed, I rang the hospital, and we went straight to Brighton. I was barely able to walk by this stage, an emergency C-section was needed due to our boy’s little heart showing signs of distress.

He was born at 7am at 29 weeks.

He was incubated and taken straight upstairs, I never saw him. My husband Adam went with him, while I was stitched up. Eventually I was taken up to see him, he was so swollen, due to being severely anaemic but yet so perfect. They told me they had given him some medicine to relax his muscles so he wouldn’t move as he had been fighting them too hard to put the breathing tubes in place. I reached in and tickled his toes. He immediately moved, pulling his foot away, I burst into tears, he knew I was there, he felt my touch and he could hear me.

His condition wasn’t good, but he had started to improve.

His oxygen input levels decreased and another 3 blood transfusions were needed and the doctor thought she might be able to save him. He held on so long and fought so hard but he was placed in our arms at 9 hours old and they removed all his tubes and told us he deserved to die with dignity, in his mummy and daddy’s arms.

Our world went black. We called him Teddy-Blu.

Our then 4-year-old daughter had been so amazing through all of this. She knew Teddy was here and was desperate to see him. Having not long had her baby sister she knew exactly how it worked. We made a heart breaking decision to not let the girls meet him, something we still struggle with today in all honesty.

Izzy-Bow knew our baby had been poorly and the doctors were helping him. We spent 3 days with Ted, we bathed him, changed his nappy, dressed him and read to him. When we finally returned home, we wanted to tell her together.

I braced myself to say the words out loud. We had to use that word, we couldn’t shy away from it. “Teddy has died, he has gone to the stars”.

She buried her head in our laps, then she cried so softly and so sadly. After a while she got off our laps and went and played with her dolls (something she hadn’t done for a long time) she came back even more tearful because she realised she didn’t have a boy baby.

Adam took her to the shops there and then, she chose her boy baby and bought him home. She called him Teddy-Blu or sometimes just Blu. He stayed with her for a good few weeks after that.

The loss of her brother has affected her in so many ways, her stammer worsened, she started bed-wetting and she struggled with being separated from me.

The days, weeks and months after are a dreamlike state to some extent, but I was angry. I was angry with the professor for not saving him, for making me laugh at such a desperate time.

I felt let down, he wasn’t the saviour we needed, he was now the devil. I had a C-section to recover from, an allergic reaction to my stitches and we also had to plan our son’s funeral. A one year old to take care of and Izzy starting school, we both felt we were at rock bottom but without really being able to be, as we had to keep going for the sake of our two daughters.

When I first heard about slapped cheek we had no idea of the devastating effects it could have. I’d looked online when I knew I’d been in contact with it, the NHS website made it sound so rare and that it hardly ever got passed over to the baby.

We had spoken to so many people, midwives, GP’s, friends, family most of whom have never even heard of it and those that have had no idea it was dangerous during pregnancy.

Slapped cheek is the second most common childhood illness. I was told I’d properly already had it, 60% of adults have had it as a child. But that still means 40% haven’t.

No screenings are done during early pregnancy booking in for immunity. According to MP’s, it’s not worth it as you can’t prevent it. Then how about actually telling women about it, give them a leaflet, mention it when they are warned against chicken pox?

I consider us one of the lucky ones, we got the chance to fight, we had hope, and we held Teddy while his heart was beating. Many others didn’t get that, because they didn’t know about slapped cheek.

They went undiagnosed and then it’s too late. The NHS says that unborn babies are at risk only before 20 weeks, as contracting it at this gestation could lead to miscarriage. This is wrong. Many others and I contracted the virus after 20 weeks, leading to neonatal deaths and stillbirth.

I no longer view the professor as the devil, we are grateful to him for the hope he gave us. For confirming to us that our little boy was worth trying to save.

Our lives have changed forever, it never really sunk in that he might die, even after signing the form or him being born. We heard it sort of, but then let it go again. Even now 17 months on, it can still hit us so hard the enormity of what happened to our son. Our days will forever have blackness, but in the rays of sunshine and times of strength we will continue to raise awareness and raise money.

In one of those rays, in memory of Ted we started Teddy’s Tribe Foundation.

We want to improve the information given about slapped cheek and have the information accessible to all pregnant women. Very recently we have had confirmation that after sharing our story with our local MP, “start4life” will now be offering advice and listing slapped cheek on their website, email subscription, and their personal advice line. It’s a small step but it’s in the right direction.

In the past 17 months there have been three sponsored events. Money raised has gone to the Trevor Mann Baby Unit (Rocking Horse Children’s Charity) and the Fetal medicine Foundation.

A skydive by Adam's Mum, Pedal for Teddy – where Izzy-Bow cycled a mile and a half – and the Brighton marathon with Adam and friends and family. Izzy-Bow has currently raised another £100 by selling her paintings outside our house and on Facebook.

At present we are raising money to buy the unit some more breasts pumps, for the mummy’s of the poorly babies to express their milk for them.

Elephants are very important to us, they have always just appeared when we least expected them, so we are making and selling ‘The Elephant and the Star’ Christmas tree decorations in memory of Ted. All profit from this will go towards the breast pumps.

Teddy has left his imprint on us and is eternally in our hearts.

We are still his Mummy and Daddy and he is the reason for everything we do.

Facebook: Teddy’s Tribe Foundation
Instagram: The elephant and the star
To donate: www.justgiving.com