Today we want to tell you a little about having to tell our eldest daughter Izzy-Bow, who was 4 at the time.
We had already told her about the pregnancy and it wasn’t long after having her baby sister Betsy, so she knew exactly what was going to happen.
Her little face when we told her was just pure joy and she couldn’t wait to be a big sister again. A few days later Izzy told us she wanted to call the baby Blu.
After the first blood transfusion, I had a short stay in hospital due to having cramps and contractions. The nurses at the hospital were amazing and kept me in to ease my worries, to make me sleep and just offer some support.
We decided that because Izzy is such a bright little button, it was better to be as honest as possible with her.
So, we explained simply that the baby in my tummy was a little poorly so the Drs were helping to make it feel better. I remember her cuddling and kissing the bump “telling her brother/sister it will feel better soon.”
After Teddy was born, we were really unsure on how to handle it with her.
I phoned my mum after Teddy was born, he was still with us then, but he was being monitored in the Trevor Mann special care unit. I was checking on the girls and letting her know what was happening.
Izzy somehow picked up that Teddy had been born so of course she was over the moon. We explained that she wasn’t able to see him yet because he was very small and poorly and the Drs had to look after him.
A few hours later our world came crashing in and the worse happened.
We were then faced with…. How do we tell our 4 year old daughter that her baby brother has died?
Our daughters came to the hospital once during the 4/5 days we were there. We chose for her not to meet him for many reasons.
When we came home we sat with her together. Again, I explained how poorly he had been and how small he was. I tried my very best not to cry as I said it “The Drs tried their best, but he was too sick. I’m so sorry baby, but Teddy died.”
She buried her head into Adam’s lap and cried. So quietly and softly. We sat and cuddled her and let her take her time.
When my grandad had died, who she called Pop pop, we had told her that he was a star. We decided that this was still the best thing to say. She believes they live on a star together and Pop Pop looks after Teddy.
After a while she asked if she could play with her babies. (She hadn’t played babies for a while until now) She came back in with them and said “I don’t have a boy baby.” Adam took her to the shops and she chose a boy baby in a blue baby grow. She called him Teddy-Blu and played with him a lot in the first few weeks. It was the one toy she didn’t have to share. Even now, he’s no longer called Teddy-Blu but he is still special.
It was heart breaking to watch her fill the shoes of the baby brother she was expecting to come home with a dolly, but it was what she needed to do.
So, four months on she still talks about Teddy. We take her when she wants to visit his garden. On one visit Izzy asked if she could take him some of her toys. She plays football with a ball that is left there. There are even times when she talks to him.
When Adam made the decision to raise money for the charities, Izzy asked what a charity was. Immediately she asked if she could do something….
So this is Izzy’s fundraiser in memory of her brother Teddy-Blu.
‘Pedal for Teddy’
2 x round Tilgate Park with some of her cousins and friends.
Please get behind the little people of Teddy’s Tribe
#teddystribe #babylossawarenessweek #parvovirusb19
It doesn’t even sound like a real thing?
Fifth disease/Parvovirus B19 or Slap cheek syndrome as its commonly known does the rounds at schools and nurseries every year and the results are usually that the child has flu like symptoms coupled with very red cheeks. Symptoms can sometimes be so mild that people don’t even know they have had it.
Katie works in a school and while pregnant with our second child there was a bout of slapped cheek.
Katie informed her midwife, who was able to do a blood test to check if she was immune or not.
Slapped cheek is like chicken pox, once you have had it you form a natural immunity. Katie wasn’t immune, but the pregnancy continued fine and slapped cheek wasn’t an issue.
She was reassured that even if she did contract it during pregnancy that the chances of it actually effecting the baby were very slim, less then 1%.
When Katie was pregnant with our third child there was a slapped cheek epidemic.
It was at school and it was also at our daughters nursery.
Like chicken pox, slapped cheek has an incubation period which can be up to 21 days before you start seeing symptoms that might clue you in.
Up until the point you develop the red rash you are contagious, it can spread as easily as a common cold.
The advice was to try and avoid contact, but again the chances of complications to the pregnancy were slim as its only an issue when under 19 weeks. This was according to all the information we could find online and following discussions with our dr..at this point Katie was 22 weeks pregnant.
As soon as we found out Katie may have slap cheek syndrome we contacted our local hospital.
We had to wait a week before they would allow Katie to come in and have a blood test.
We then had to wait another 5 days to receive the results of those blood tests.
They were positive and the next day we were scanned by a consultant, the reason for the delay was that the hospital didn’t want us bringing the infection to the hospital.
At the scan we were 25 weeks pregnant.
The scan was so they could check that everything was ok and the baby was developing normally and not showing any signs of aneamia.
As soon as the dr saw the scan picture she left the room, talking about having to arrange an emergency and she would be right back…little did we know, the emergency was us.
We were sent to Kings hospital the very next day to be seen by the world renowned professor in fetal medicine, professor Kypros Nicolaides.
He informed us that our baby had fetal hydrops, which means he had large amounts of fluid around his heart, in his abdomen and around his brain.
He was very sick from the parvovirus and would need to have a fetal blood transfusion (intravascular) to increase his blood oxygen levels (haemoglobin)
The main side affect of an unborn baby contracting parvovirus is that it affects the babies ability to create red blood cells (oxygen) which makes the baby severely anaemic.
Putting it bluntly, our baby was in trouble and needed this treatment.
The fetal blood transfusion consists of a long needle being inserted through the tummy of the mother, then directly in to where the umbilical cord meets the placenta.
You sign a form every time they do this procedure as there is a very real risk of fetal demise (their words).
For us, this was the only option, it is the only treatment they could do the save his life.
The professor and his team then calculated the amount of blood that was needed to raise our babies haemoglobin levels and the transfusion began.
We were told numerous times that most babies would only need one transfusion of oxygenated blood and the symptoms usually reversed and the baby would be born on time and without complications.
After our third blood transfusion
the professor (who pioneered the procedure he is performing) walks in scratching his head because he has never seen a baby not respond to this treatment, it became increasingly difficult to remain hopeful. But we did, even after the fourth transfusion and the fifth. We always fought back those thoughts of ‘what if’s…’
Between each of these transfusions there were hospital stays to monitor baby as each transfusion caused different reactions.
Katie was given steroids to take to strengthen our babies lungs. They hooked her up on an IV line which they used to put magnesium through, again to prepare our little boy just in case he was born prematurely.
One of the risks of a baby devolving anaemia is that the babies blood becomes very thin and low in oxygen.
This means the babies heart has to work much harder than usual to send enough blood to the brain to reduce the risk of brain damage…this also meant our baby could have heart failure at anytime.
Following the 5th blood transfusion on Friday 2nd June 2017, we were rushed to hospital the early hours on Saturday the 3rd June 2017 following some bleeding.
Due to the distress our baby was in, the decision was made at Brighton hospital to perform an emergency C-section so they could monitor our baby in The Trevor Mann Baby unit..Teddy-Blue was born at 29 weeks.
The Trevor man baby unit is a specialist unit in Brighton that cares for very sick and premature babies after they are born.
Immediately after our son, Teddy-blue, was born the nurses at the TMBU had to perform 3 more blood transfusions to keep him stable and give him every chance to survive.
When we finally met him it was very emotional and not something you can ever be prepared for.
His tiny body was very swollen due to the hydrops which was caused by the parvovirus and he was placed in an incubator on 100% oxygen.
We will never forget the moment that Dr Garland told us that our baby was probably not going to make it but she vowed that they would do all they could to save our son.
We held our boy’s hand whilst the nurses and doctors worked tirelessly around us adjusting his oxygen levels and his pain relief.
There were signs of improvement but it just wasn’t enough.
At 9 hours old, all of his tubes and leads were removed and he was placed in our arms whilst his heart was still beating.
The Dr told us that our son deserved to die with some dignity and in the loving arms of his parents.
If it wasn’t for the specialist skills and treatment we received from ‘the prof’ and his team at the Harris birthright centre at Kings hospital we wouldn’t have had any hope so we will be forever grateful that they made it possible for us to meet our son.
Although our story is not one of their successes, there are hundreds of children alive today due to their pioneering work.
So for that reason we have decided to set up Teddys Tribe to help raise money to fund further research and training in to fetal medicine.
Since doing some more research ourselves and having meetings with some experts, it seems that the risk of a fetus developing slap cheek in the womb is as high as 10%..much higher than the 1% we were originally told.
To date, the NHS website only talks about the risks to a fetus under 20 weeks, as you can see from our story, there is no ‘safe’ period.
As we write this, there is no known vaccine for the parvovirus and from our experience it is a virus that not many drs/midwifes seem to be aware of, let alone the very real risk it has to an unborn baby.
Currently, screening for the immunity for parvovirus is not part of the early pregnancy blood tests.
With all of that in mind, we feel a very strong obligation to raise awareness of the severity of this by sharing our story.
Teddys tribe will also raise money for the Trevor Mann Baby Unit.
They do a truly amazing job and the wall of success stories as you walk in to the unit of the hundreds of babies they have saved is a testament to the amazing work they do giving hope to many families with very sick or premature babies.
So, how are we going to raise money?
Having been involved with the fitness industry for the past 12 years, Adam (Teddy’s father) and 6 close friend and family members are running Brighton marathon on 15th April 2018.
We have decided on the name ‘Teddys Tribe’ which will strive to raise awareness of the slap cheek virus and raise some much needed money for two wonderful charities.
We are initially aiming to raise £10’000, which will be split equally between our two chosen charities.
If you would like to read more about these charities and where the money raised will go please click on the links below.
The Trevor Mann Baby Unit in Brighton.
The fetal medicine foundation
Thank you for taking the time to get to the end of our story, but this is only a brief summary of what we went through during this heartbreaking journey.
There is a lot more we need to say that couldn’t be covered in just one post.
But for now, this is enough.
#teddystribe #babylossawarenessweek #parvovirusb19
Welcome to our blog.
We will be using this to tell our story. It is hard to know where to begin as there is so much to tell.
I’m Katie, my husband is Adam. 4 months and 6 days ago our beautiful little boy, Teddy passed away at just 9 hours old.
Life is still raw and everyday is painful, but we need to get our story out there. We feel we need to raise awareness of what happened to our family.
Why have we chosen now to share?
This week (9th October – 15th October) is Baby Loss awareness week in the U.K.
Currently 100 babies die every week in the U.K. Sleeping or shortly after birth.
That means there are 100’s of families grieving, alone or together.
This week is aimed at letting those families know that they are not alone and to let others around them know that it is ok to talk about their baby that passed.
Please take a few minutes to read about baby loss awareness week on the link below.
Please help us by sharing our page.
#babylossawarenessweek #babyloss #parvovirusb19 #teddystribe