Ben Lee Warburton

Ben Lee Warburton

Born 10th May 2007.
Died 4th June 2007, 10.30pm.
Aged 3 weeks and 4 days old.
Home for 12 days.

Son of Lee Warburton and Kim Travis.
Sister's Ashleigh 6, Lucy 3 and twin sister Holly 2.
Grandson of Dot and Pete Travis.
Nephew of Sean and Kay, Peter and Katie, Katrina and Chris and Patrick.
Cousin of Alex, Annie, Oliver and Kiera.
Ben was much loved and will never be forgotton.

Passed away peacefully in his mummy and daddy's arms.

PLEASE TAKE A MOMENT TO LIGHT A CANDLE FOR MY LITTLE MAN IF YOU FALL UPON HIS PAGE-IT IS A GREAT COMFORT TO ME TO KNOW SOMEONE HAS THOUGHT OF MY GORGEOUS LITTLE MAN, EVEN IF JUST FOR A SMALL MOMENT OF TIME. I'M SO PROUD OF MY LITTLE FIGHTER, A REAL PROUD MUMMY, AND LOVE SHOWING HIM OFF. THANKS, KIM (MUMMY TO BEN) XXX

Ben was a twin, born at 37 weeks and 5 days gestation.

I was booked in for a planned casarean section, due to the breech position of Ben, at 38 weeks and 2 days, but the twins had other ideas and for the first time in my three pregnancies my waters broke! We were taken to hospital by ambulance for an emergency c-section.

We were not aware of any problems with Ben and although he was scanned regularly, as twins are, nothing was or could have ever been detected.

After a delivery (that we later found out had it's difficulties, when theatre staff told my mum i was lucky to have the highley skilled man i had deliver-as others would have struggled even more than him due to the twins awkward positions) we were all in the recovery room, my partner Lee and I and my mum, with the twins.
I had wondered at the time why they had shown me Holly first when Ben was born first, but when they explained Ben had a cleft pallette i just put it down to that reason. We wern't worried about the cleft pallette-knowing it could easily be corrected by simple surgery. I was in that magical just after birth daze, where the pain and tiredness is overuled by joy and elation. My twins were here, a little princess and a much wanted first son for mummy and daddy.

At the 20 weeks scan doctors had confirmed we were having a boy and possibly a girl. I was delighted to be having a boy at last and also pleased to be having another girl too-unable to imagine a pregnancy without a girl. Ben's daddy had even joked with me that if i was having another two girls he wouldn't be collecting me from the hospital!! Lee was so proud-he even asked for one of the scan pictures to be of just Ben's 'male parts'!! I immediatly began to stock up on boys clothes-particularly little tank-tops!!

I planned to try breast-feeding the twins, pleased that Holly took to it straight away. However, Ben showed no interest in feeding. We started noticing small things such as Ben not being as alert as Holly, not moving as much etc. And was that blue tinge just down to all the blue he was wearing?

At five hours old the nurse suggested a cup-feed, as i still wished to breast-feed Ben and didn't want to try him with a bottle. During the cup-feed Ben turned blue for a short time. The midwife was very calm and just suggested he needed monitoring in special-care for a while. We still wern't very worried and they even let Holly go with him to keep him company. Throughout my pregnancy i'd prepared myself for the possibility of the twins needing to spend time in scubu, as most twins do. I didn't want the twins seperated. I loved the whole 'twin-thing'-even having identical pink and blue outfits. Having different sexed twins wasn't going to stop me!

That day the first of many doctors came to see us. We were firstly told Ben was blind. Confirmed full blindness in one eye and at the most very blurred vision in the other. Devastated we cried, wondering how our little boy would ever play football.

Looking back i feel so shallow. What I'd give to have a son who's only problem was being blind.

Later that day we spoke to a doctor in special care. She explained they suspected that due to Ben's facial abnormalties on one side of his face, a small eye,a deformed ear, collapsed nostril and out of line jaw and chin, that he may have some sort of syndrome, possibly Golden Har.
CHARGE syndrome and Di Georges were also mentioned but later we found out Ben had all his chromosones complete and no faulty genes, ruling out thoses syndromes.

We began to dread when a doctor came to speak with us. They always brought bad news. We seriously considered locking ourselves in our room at one point!
However throughout we kept our spirits high-even making a joke of how every doctor had the same routine of entering a room, shaking our hand and saying "Hi, i'm doctor...".

When Ben was born they'd detected a heart murmer. We wern't worried-as they explained most babies were born with heart murmers that healed themselves, my brother Patrick for one.

On the Friday, the day after the twins were born Ben went to Leeds General Infirmary for a heart scan. I didn't go with him as we thought he'd be straight back and i was struggling with the recovery of the section and also had Holly to care for.
Around lunchtime they told me Ben was being kept at LGI so me and Holly were to be transferred there too.

Looking back i think i was no longer taking anything in as i really wasn't overly worried when maybe i should have been. Also when you've previously had two healthy children i think you take it for granted that all your children will be born healthy. You don't expect to have ill children, you don't expect your children to die-that only happens to other people-doesn't it?

Tired from the birth, transfer and past 24hrs i was desperate to see Ben. I didn't expect to see him in an incubator, covered in tubes. I fell ill with shock, not taking in anything the doctors were asking or telling me. I had to be taken back to my ward. I was sick all the way along those corridors.

Ben needed an heart operation. The doctors were to take scans then present his case to the surgeons. We prayed they'd agree to operate.

It was hard juggling family-life. I was discharged from hospital and offered accomadation at the hospital but decided i needed to establish a routine for my three young girls at home. When i was at the hospital i missed the girls, when i was at home i missed Ben.

Throughout we NEVER thought we'd loose Ben. We stayed positive throughout, talking about the future. I'll always wish I'd have spent more time at the hospital with Ben, had i have known from the start i would have just held him constantly.

The time came to meet with the heart surgeons.

It's there we found out just how complex Ben's heart condition was. Ben faced a life of high-risk surgery and medication, his first operation holding just a 10% chance of survival. Yet Ben wouldn't survive without this operation.
Ben had a complex heart condition known as Truncus arteriosis with leaky valves and an interrupted aortic arch.

We knew we couldn't live with ourselves if we didn't give Ben every chance though-even if the odds fell to 1% we had to do all we could for him. Odds didn't mean anything to us-our boy wasn't going to die, things like that only happen to other people, not us. Besides i already had three other healthy children. We didn't even need to discuss what we wanted to do.

The next day Ben was sent for a brain scan as he was having what was known as apnoeas which is the term used when someone stops breathing temporarily. Often Ben would need resusitating, sometimes in intensive care.
Apnoeas can be caused by the medication Ben was on for his heart, but another cause can be when something is wrong with the brain.

Once again we met with the doctors.
It's there, in that room, that our world was turned upside down.
Ben was severly brain-damaged.

Ben wouldn't have had a very high quality of life-he faced being blind, deaf, epileptic-having 80-90 fits a day, which could have possibly been controlled with medication but could have made him extremely sleepy and i don't like the idea of someone being pumped with so much medication. Ben's spine hadn't fused together properly so over-time it would have curved making chest infections even more of a risk than the high risk they were minus the spinal problems. Ben would have been unable to move his arms and legs, unable to speak or swallow, be fed through his tummy and have servere learning difficulties and possibly autistism. He would have been classed medically as severly retarded. He would have never progressed past the stage of a four/five month baby and had he overcome all this miraculasly his life expectancy was a mere twelve/thirteen years. The parts of Bens brain that were missing and affected included feelings, memory, learning and development.

How would any child, let alone Ben cope with the recovery and pain of these operations, trapped in his own little world in his broken little body. And did we really want to loose Ben on the operating table, surrounded by strangers?

We had to choose-did we want to operate or not.
Ben wouldn't survive without this operation.
Who was we to play god?
To choose whether Ben lived or died?

24hrs earlier we'd laid in bed saying whatever the odds we'd give Ben a chance. That night we lay in bed knowing the scales had tipped.

I just wanted to take my baby home.

The next challenge was actually getting Ben home, we'd already takn him off his medication and agreed he wasn't to be resusitated.
Ben hated any interference and would often have an apneoa as if to say "i'll show you", we were so scared of losing Ben on the journey home and never actually getting him home alive.
This is why we'll always be grateful to Ward 10 at LGI for giving us the support and confidence to care for Ben. We stopped on the ward for several days until we were confident to go home. We experianced his apneoas knowing any one could be his last, this prepared us for when Ben's time would come.

We feel life would have been too cruel to keep Ben alive.
We had to put Ben first. Although our loss would have been unimaginable, we had to put Ben first.

It's a decision no parent should have to make.

We chose to let Ben spend his last few days at home, with his family, pain-free.
Ben was comfortable, the only tubes being the one to feed him a constant supply of warm milk.
Ben had many cuddles and even walks in his pram. We took hundreds of photos, dressed him in lots of different outfits and took hand and foot-prints.
Ben continued to have these apneoas, where he would turn blue and stop breathing. We never knew whether each one would be his last, but we just cuddled him through each one.
Sometimes i'd get the urge to rush him back to the hospital, tell them i'd changed my mind and i wanted them to do everything they could. But that would have been cruel to Ben and i had to put Ben first, not me and my feelings.
Often we'd think was Ben going to prove the doctors wrong?
In our hearts we hoped, in our heads we knew.

On that Monday Ben noticably deteriorated.
We knew his time had come.
Throughout we'd wanted to be together, as a family of six when Ben's time came but Ashleigh and Lucy were still quite young to fully understand and needed care and attention so they left to spend the night at nanna and grandads. Holly being newborn stayed with us, it was only right that she was there with Ben as he passed just as she had been when he was born.
Ben had never had a bath, as any shock could bring on an apneoa and we didn't want to loose him that way. That night Ben had a bath with his daddy-the one thing is daddy had so desperatly wanted to do. I fluffed up his gorgeous little hair, clean and fluffy for the first time-even showing what daddy called the colour brown-but mummy called gingery-brown!
We dressed him in the most gorgeous little outfit. He looked so 'cool' in his little hoody and jeans. I got all his clothes out that evening, we calmly chose Ben an outfit to 'die in' just as we'd choose the girls an outfit to go to the supermarket in. Just so surreal.

We sat on the settee and cuddled Ben that evening as his heart slowed and breathing stopped.
Ben's daddy listened carefully to his sons heart through a stephascope.
Ben passed away in our arms, peacefully and not alone, just as we'd hoped. I still remember the single tear that rolled down my face, i wasn't hysterical, it was all so peaceful. A tear of relief that my son was no longer in pain.

Ben was such a brave little fighter-he kept fighting right to the end. We even gave him a dose of antibiotics for his little cold shortly before he passed-part of us hoping he had longer with us and part of us, especially Ben's daddy, just needing to do something for his son.

People always told us Ben would 'choose' his time and he chose well. I hate to use the word perfect but it was-we couldn't have asked for a better passing for Ben. Our biggest fear had been that Ben would pass away in the night, all alone.

He stayed at home with us until the next evening-it was such a surreal experiance. Holding our baby who had passed away. But Ben was our little boy and it all just felt so natural to have as many cuddles as possible. He was still Ben.

I'd dreaded the undertaker coming for Ben since we knew he was terminally ill and it was the most painful thing ever-letting my son go through that door, knowing i would never see my son alive again, even though he'd already gone. I couldn't carry him out to the undertakers car, he just had to take him, i wouldn't have been able to carry my son out of the house...i'd have never been able to let go.
I just told him 'please look after him'.

Ben went to a local chapel of rest.
It was hard to not act on my role of a mummy and phone them up and ask if he was alright/how had he been etc...just as you would with a living child at daycare.
We were nervous about visiting him but happy once we had. Ben had never looked in pain during his short life yet looked so peaceful and out of pain in the chapel of rest, in his little moses basket with his giraffe. dressed in the last special little outfit we'd bought for him to wear, the outfit we walked into next and chose for our son to be buried in. Looking back how we just went and did things like that...

We placed a ring in Ben's hand, it matches the rings me and his daddy wear. Our Ben rings.

When you loose a child you cry like you've never cried before. All the hurt and pain throughout your life is so minimal in comparison. This is a cry that physically hurts, your heart genuinly aches. It breaks and from then is only held together by sticky-tape. Your arms forever feel physically empty as they ache for that one more cuddle you'd do ANYTHING for. It changes your life forever.

We feel so lucky though. We had Ben for three weeks. We got to take Ben home from the hospital. We were with Ben when he died. We knew Ben was going to die. We got to say goodbye. A lot of parents arnt that lucky.

During Ben's life we were reluctant to let people visit and i do now wish i would have let people visit as the amount of people Ben touched is overwhelming, but i hope they can understand that at the time we did what was best for us. We wanted Ben's passing to be private and i was scared Ben would pass away whilst people were visiting. We were new to this and didn't know what to expect. Ben should have met you Lauren.

We also had to do what was best at Ben's funeral. We kept it so private, just Ben's family as we wanted people to come and cry for Ben, not just for 'a baby'. I also didn't want to feel as though people were watching me and my grief. Ben's dad is not religious in the slightest so we chose to have a small ceremony around the graveside. We had a vicar, Ruth, who did a beautiful service-short but said everything we could have wished it to.Afterwards we went to a nice country pub with a beautiful beer garden for the children to play in. We invited a few people and the idea was to share a nice afternoon together, a few drinks, sandwiches etc, bouncy castle for the kids-especially uncle beephead.

Throughout my little mans life he was associated with giraffes. The reason being they popped up everywhere! From gifts of teddies and clothes to murals above his hospital bed. His coffin was specially designed with giraffes on it. Ben's headstone also has giraffes as a theme. Giraffes continue to offer me a great source of comfort-i like to think that when one pops up somewhere it's Ben's way of saying hello to me.

I since found out that there was a possibility Ben wouldn't have even recognised me as a mother figure which is heartbreaking. However, i strongly believe he looks down now and knows just who his mummy is.
I asked the doctor would Ben have been a person stuck in a body, unfortunatly Ben was 'nothing' in a broken body. I don't disagree with this but Ben you will always be someone to us xx

A Message To Ben

We knew we couldn't keep you forever
Although perfect to us on the outside
Your poor little body was so broken on the inside

But thankyou our brave little man
For fighting as long as you did
And giving us the chance to get to know you
To build all those special memories
That we will cherish forever

Ben, forever they'll be part of us missing
We'll never forget you and love you always

Now sleep tight little man
Your fight is over

x x x

We have since met with the Genetics team who are pretty confident Ben had Golden Har Syndrome, on the servere end of the scale. Unfortunatly there is no test for this so we will never be able to confirm this as definate.
They believe Bens problems probably occured due to a blood clot in my pregnancy. This is something that yet again will never be able to be proved. The blood clot would have be so minute and happened in the first few weeks of pregnancy, got into Bens blood stream and just set things off down the wrong path of development. Nothing could have prevented this.
Fortunatly Bens condition is not genetic so future generations needn't worry nor need we worry about Ben's sisters-particularly his twin Holly.
I remember being slightly disapointed the twins wern't identical-but had they have been i wouldn't have Holly either. Also throughout my uncomfortable pregnancy i moaned that my twins were in the 25% minority of twins that didn't arrive before 36 weeks. I feel Ben, being twin one, was something to do with this-had i have had the twins earlier Holly may of been poorly due to premerturity and we may not have had Ben as long had he been smaller and weaker. I was in such a state of shock to discover i was even pregnant with twins in the first place-but i know Holly was sent to help me through this.

A special thankyou to PGI and SCUBU. I wish i remembered the lovely lady doctors name and the midwife Gill who cared for us during the delivery and recovery.

A huge thankyou to all on ward 56 at LGI for spoiling me!!

And, well, thankyou just isn't enough for all the staff on ward 10 at LGI. Your all amazing people doing an amazing job and without you we wouldn't have had the confidence to take Ben home, the one thing we so badly wanted. You gave us the confidence and support to do this, particulary Steph who gave us so much support. Always there to talk to us. You told us to take our little man home and 'love him', which we did. Who'd have thought we'd have stayed so calm but you helped prepare us for Ben's time. We only got one chance at it and thanks to you you helped us make it as perfect as we could have hoped for. Thankyou, you are all a true inspiration.

I hate when people ask if i'm going to sue the hospital, nothing could have been detected and even if it would have been-nothing more could have been done for Ben.
If i'd have know anything was wrong with my little man i doubt i'd have carried the twins as long as i did due to stress, therefore having premature twins-putting Holly at risk, and we have to ask ourselves would we have had Ben at all had he have been born any earlier and weaker.
How i could even concemplate suing a hospital that has done so much for us and needs all the money it can to continue with the amazing care it provides. If anything i wish to raise as much money for them as possible.
You take for granted the services that are out there until you need them.
No amount of money is going to bring our little man back or stop us missing him as much as we do.

And of course Christina-gold medal for putting up with Lee and his demands hehe (he has recently purchased a washer and dryer hehe). Thankyou for all your support-you've been our 'rock' throughout and more like a friend. I know i've found a friend for life. Thankyou for always being there for me. Ben's last days with us wouldn't have been as specail as they were without all you did for us. I hope you realise just how much you did for us and how much it meant. I'm glad you were part of Ben's life.

Thankyou Dr Mike, even though Lee has called you every other M name apart from Mike!
And Martin House-what a wonderful place, yet again another service you are not aware of until you need it.
Thankyou to Tommy who continues to keep me on track and provide an ear for me to talk.

Thankyou to Ruth for the beautiful service and all your support, and just being there when i need a chat.

Thankyou to all the staff at Henry Moore Clinic for your ongoing support.

Thankyou to all the May Bounty girls-your kindness as overwhelmed me.

Thankyou Heather-i don't think you realise how much you've helped me through this. Your always there, a truly remarkable person who puts aside your own pain to always be there for me, a complete stranger. And like i've said before-i truly believe Rosie and Ben are together, that's why their mummies had to become friends too!! Rosie couldn't ask for a better mummy. Rest in peace beautiful, cheeky little princess xx

Thankyou to all the OFB girls and special children i've come across and the love, support, comfort and friendship i've recieved.

And most of all thankyou to all my family for everything.
Ben has brought everyone so much closer as it's things like this that make you realise just how much you take life for granted and how lucky you are to have what you have. Material things don't matter as much as family and love, whether it be that of a parent, sibling, partner or child.

Thankyou Lee for being such a great dad to our children.
Thankyou for everything you did for Ben, i'm so proud of you, and us for each day we get through this pain together and adjust to our new life and relationship without our son.
Thankyou for carrying Ben' s coffin, i don't know how you did it but it means so much to know he travelled in the car on your knee and to his final resting place in your arms.
I love you all around the world and back again, plus more...lots more xxx

Ben's SPECIAL angel friends:
Rosie Tingey
Baby Dumpling Tingey
Daisy Mai Whittall
Myles Samuel Squirrell
Jamie Anthony Henderson-Long
Angel Baby Henderson-Long
Ethan Michael Norman Perry
Steven Paul Moore (superstar)
Abigail Jade Haley
Ethan and Emily Morris
Bradley Wickings
Bobbi Louise Morgan
Lola Helena Catherine Rice
Amy Nicole Liddle
Jamie Paul Wicks
Jayden Jeffkyns Danby
Paula Tomney
Jamie Statham West
Alfie Allwood
Liam Coombs
Olivia Perkins
Olivia Rose Hoon
Emmie-Lee Louise Hill Dempsey Burns
David
Enzo William Fiore
Daniel Joseph Unsworth
Coist John Freeburn
Hannah Lomacks
Lucy Dunnes