The RUNCUBATOR! Bliss & Contact - LDN Marathon '22

Hello, I'm Graeme.

This year I'm going to be running the London Marathon pushing a (modified) GE Giraffe Baby Incubator . I'll be doing so on behalf of charities. Bliss for babies born premature or sick. And, Contact for families with disabled children. As I'm raising money for two charities I did research into the best platform to go with and gofundme came out top, hence where we are today! So please have a read, give what you can to these great charities and hopefully come and cheer me on in October in London !

Ok, so why?

Short Version

Our twin boys Ted & Bert were born 9 weeks and 5 days early. 

These are two great charities who help people when they have no clue what is happening, always there to offer help, guidance and support.

To us they have been invaluable and I'm sure that's the case for many others out there. We know times are tough so please give what you can and just wishing us well and sharing this questionable Marathon idea is equally as wonderful!

Love the Longstaffs!

Very Long Version

Nothing can really prepare you for it; I guess you can apply this to any birth, but on Monday 11th May 2015 and after only two prenatal classes and a few checks to make triply sure we (Raych, my wife and I) found ourselves heading quickly to Heartlands Hospital in Birmingham as this was the closest one that had the facilities to deal with such an early birth.

It was around 8 pm when we arrived, and after numerous checks, we were informed that there wasn't any space in the Neo Natal ward at that time, so we'd have to be taken to another hospital. In your head, you think, ok just somewhere local, no worries I'm sure it'll be fine. Bolton. That's where the nearest space was, a good 2.5 hrs away. I'm not complaining by any means you'll go wherever you need too...however Raych was whisked off to the ambulance but I wasn't allowed to join her. I remember not really knowing what to do, but at 2am I whizzed home, packed some bags and headed north. I can tell you then that the 50mph roadworks on the M6 was the most utterly painful thing I've ever had to contend with.

The nurses at Bolton were totally wonderful and made the best tea and toast in the world. They kept Raych under constant watch and after an overnight stay they were happy there were no contractions and that we could be discharged on Wednesday to head home. With the instructions to head back to Heartlands and get some antibiotics to keep baby safe from infection.

Thursday came and we visited Heartlands (not for the last time that day) to be checked over and collect the antibiotics. All good. Take these and things will be plain sailing right? Later that evening nature had a different idea and...back to Heartlands we whizzed. 

The Doctors and Nurses confirmed that this time things were really moving and shaking. It was an unreal experience (for me, probably more so for Raych) the team assemble like a really lovely SAS unit all knowing what's going on whilst whizzing about at the speed of light. I must say I’ve never felt so utterly useless in all my life, but just knowing that Raych was in the best hands around was all the comfort I needed. Ted arrived first at 11:30 am and weighing in at 3.5lbs, Bert was hanging on in there not wanting to leave the comfort of the womb and at 12:30 out he came into the world weighing in at a mean 3lbs. After each birth both boys were instantly wrapped in a foil blanket, placed under a heater and whisked off. There was no bonding with baby like in a ‘normal’ birth, but as this was our first and everything was already pretty nuts we didn’t stop to think. As they moved Raych up to the ward we had a wait a while to see the boys, I guess whilst the Doctors and Nurses got them settled into their new environment.

I remember being asked if I’d like to come and see them, currently named Longstaff 1 and Longstaff 2, and when the doors unlocked to the Neo Natal ward the transition was like day and night. It felt like entering a Techno club, darkly lit, lots of neon flashing lights and bleeps and bloops all over the place. It’s surreal! And I only think you know if you know as it’s this exclusive club no one really wants an invite too. The boys were both in separate incubators, with protective patches over their eyes and tubes and wires coming out from all over the place to monitor every heart beat and breath. With Raych being kept in over night again I remember heading home a dad to an empty house, quite a surreal feeling thinking had it all been a dream? The next day I was up early to get back to Raych and the boys where we found out that there wasn’t enough space for the boys at Heartlands so they’d have to be transferred again…fortunately for us it was only a little bit up the road to New Cross in Wolverhampton.

New Cross was a great place - odd as that sounds… the nurses and doctors were all fab and really made you feel at ease with the situation you were in, always making sure that as parents you were well rested and taking care of yourself, as if you weren’t you would be able to be there for your little ones. Here was where we had time to actually begin bonding with the boys. Raych would go up in the day time as although we had no kids at home she was instantly on maternity. And I would go up for the evening after work. From petting them through the incubator hatches, to moving on to feeding them via their feeding tubes, to changing their nappies - at the time it was hard to get nappies to fit babies so small…since then Bliss has worked with Pampers to tackle this, and now Pampers donate their premature nappies to hospitals and those in need. However our time at New Cross wasn’t all plain sailing. It was where we were first informed of the bleed on Ted’s brain and the potential future problems we may face, however it was too early to tell what affect this would have on Ted and right then their main concern was to monitor it to make sure it wasn’t getting any worse.

After two weeks of being in New Cross, and thankfully down to good progress from feeding and putting on weight (others aren’t so lucky as us) we were able to be moved to Good Hope Hospital in Sutton Coldfield. Which was due to be their original place of birth, and thankfully was only 20 mins from home which made visiting much easier. The next six weeks kind of whizzed by, Good Hope was another lovely place and when you’re visiting so often it becomes your second home and the nurses your second family. The boys moved up to sharing and incubator and then into a bed with lovely knitted blankies made and donated by local folk (which we still have now). The last few weeks you began to shift into the mind set of that soon we might be able to bring the boys home and begin to become a ‘normal’ family, everyday you’d go in waiting for the consultants to do the rounds and give you the heads up on when your leaving date would be coming up. I remember the day coming, but before you’re allowed to go you have to spend a night in the SCBU parent and baby room. I’m not sure whether it was intentional or not but this room was the hottest, stuffiest room I had ever (or never maybe more spot on) slept in…in the am I literally couldn’t wait to get the boys ready and get out of town to our own home and space…this was not before crying lots at all the support, love and care we’d received over the last 8 weeks. It’s overwhelming and very very humbling. We will never be able to repay this debt.

The next year passed pretty incident free, with people asking how we did it with two babies when one was hard enough. The truth of the matter is is due to the 8 weeks in SCBU the boys came out in the most regimented routine ever, feeding every four hours on the dot and sleeping when they should…not that I would wish anyone to go through what we did but at leas there was a little silver lining :)

It wasn’t until the boys got to about crawling age when we began to see the affects of Ted’s brain bleed. I will say very fortunately that it hadn’t seem to have affected him from a learning and interaction side of things, it was much more obviously down to mobility issues. At first it was just bum shuffling lots, whilst Bert was crawling away all over the place - now although this isn’t anything out the ordinary I guess having twins you subconsciously expect them to be doing stuff at the same pace. Also during their swimming lessons both the boys loved it, but whenever we had to do one exercise of holding on the bar at the side of the pool Ted would scream the place down, for no real obvious reason. 

As time progressed and we kept working with the boys we noticed that Ted would shuffle more with his left leg, and pick up toys etc.. with his left hand, this coincided with Ted going for CT scans to gain more info on what had happened during his bleed and now that his brain had grown more. I can’t remember the exact point where we had an official diagnosis but the chance of Cerebral Palsy was already on our radar, but finally it came out that Ted suffers from what is known as a Hemiplegia (a form of CP) that affects one side of his body, Ted having a right sided Hemi.

There began our (I say our…definitely much more Raych) research into all things Hemiplegia, what it meant to Ted, us and what we could do to help him. Thankfully out there in the big wide world was a little charity called HemiHelp, set up to do just what it said. Be a source of information, advice and support for all things hemiplegia related. It wasn’t just the charity that were amazing but the whole community that came with HemiHelp via a very active, friendly and informative Facebook group where everyone was treated with the hugest of love!

Over the following year or so we worked with Ted across a wide range of activities from seeing Physio therapists to interactive games to encourage the use of his right hand and to try walking. From harnesses that we would wear with Ted attached to promote his walking, to walking bars that gave him the confidence to take steps whilst being able to hold on to keep his balance…there were many sweeties consumed to get Ted to take steps…I’m pretty sure he out smarted us with every step! Finally, we settled on getting Ted a Kaye walker frame and although some people said this might slow down his root to walking unaided our desire just to give Ted some independence out weighed this. To see Ted zipping about was a total joy!

And, down to Ted’s grit and determination it was only a matter of months before he started taking his first unaided steps - this was one big emotional moment for us as parents I can tell you! And from then till now there’s been many up and downs, head bumps by the dozen, trips for various leg splints to be made and trialled to help Ted from tripping over himself. Now just turning 7 Ted is a super happy little dude, and yes he might not be able to climb trees and ride bikes like his twin brother Bert, but he’s a super bright kid with a positive outlook and huge passion for football, Supporting Coventry City and Tamworth FC as well as training and playing for Solihull Moors Ability Counts; music and maths.

Who knows what the future holds for Ted’s progress in living with his Hemiplegia, but I can say one thing for certain we probably wouldn’t be where we are today without all the help and support from HemiHelp (now part of Contact) and the community.

Still here? THANK YOU!

We know times are tough so please give what you can and just wishing us well and sharing this questionable Marathon idea is equally as wonderful!