Monthly Archives: October 2013

TOMMY’S BUBBLES: So Perfect…So Fragile. Reflections on a neonatal death

So pefect...so fragile

So pefect…so fragile

Tommy was a beautiful baby; I’ve seen the photos! But after a 10 day fight he passed away in the arms of his lovely Mom Amy along with Dad Chris in the parents room of a West Midlands Hospital.

I’d seen them before; I buried their other son Jayden who died in the womb at 20-something weeks gestation a year ago.

And when Amy and Chris contacted me to tell me that Tommy had died it broke my heart. That it should happen at anyone is tragic; that it should happen to this couple for the second time in one year is without words. And when they asked me to take their son’s funeral, well…

And on the day of the funeral family and friends turned up to pay their respects. Each person was given a pot of bubbles and, at the request of Mom and Dad, I was asked to invite those present to blow their bubbles- which they did – all except me! Why? Because, whilst I managed to get the top off the bubbles, I couldn’t get the wand out. And the more I tried, the slippier my fingers became and the more impossible the task. I told the people at the funeral about this, and they laughed! They knw what I’m like.

The service proceeded, and it was at the point in the service when we were all listening to a piece of music as a reflection, that I succeeded…the bubbles were open. And from behind the lectern, where I was sitting listening with others, I blew bubbles for Tommy. Important, because in his short life amongst us Tommy blew lots of bubbles, and his parents wanted to mark that aspect of his time with us.

They’d told me so much more than this of course. Of his beautiful black hair; his beautiful eyes; the way in which, whilst he would play up for the midwives, he would open his eyes when Mom spoke to him, and curl his little hand around Dad’s finger. Of how he was a fighter, and fought for 10 days (‘stubborn like his mom’) and when he passed away ‘he seemed to wave goodbye with his hand.’ Of how they still sleep with his blanket which holds the smell of him.

And still I blew my bubbles, in the crematorium chapel, and in my mind a picture formed. The picture of something so perfect, and yet so fragile. And one of the bubbles landed on the floor, it stayed for just a little while longer than the others; and just as I thought it might stay forever, it was gone.

At the graveside, after the service in the Chapel, we laid him to rest with his brother Jayden whose funeral I remembered as if it were yesterday. “One on top of another,” said Mum, “like the bunk beds we would have had for them.”

That was a while ago now. I still think about Amy and Chris, of Tommy and Jayden and of all the family. I have met some incredible people in my life; some inspirational people in my work as Chaplain; and Amy and Chris are up there at the top. I wish them good fortune, happiness and peace.

And the other day I saw some bubbles…

…just some kids playing and havig fun…… but guess who I thought of?

TALES FROM THE RIVERBANK

tales_of_the_riverbank_1

There is a particular dynamic to being in Hospital when the patient is your child. The worry, anxiety and concern (take it from someone who knows) is at times overwhelming. In situations like this you want excellent care, support and understanding.

Riverbank is the Children’s ward at Worcestershire Royal Hospital. I don’t have that much occasion to visit it but when I do the staff are always so kind. And that is matched by some tales by children and parents. So here are some “Tales from the Riverbank.”

“From the time we arrived on Bank Holiday Monday, we have received the best care and attention. Special mention to Vicky and Lyndsey our nurses (thanks for the balloon monkey), for Stacey our main nurse on 3 nights. She gave [N] lots of care and support when he felt so ill. You kept us informed all the time, to Mr. Pandi and the great surgeon who did the op (sorry forgot name) and all the staff, nurses support staff, cleaners whom all worked so hard.”

“Fabulous service. very calm and clean. Always smiling and cheerful. No faults at all.”

“Pleasant, helpful staff. Relaxed feel which was reassuring. Good clear explanations about medical issues. Thank you! ”

“My son and I were treated with kindness and thoughtfulness and respect. All staff most helpful and cheerful. The room was most comfortable and clean. Thank you for making a long weekend very bearable.”
“Nursing staff on Riverbank are outstanding. Always ready to listen, comfort, care and make you feel safe. Although we didn’t want to be here, the stay was made easier by their caring natures. Always ready to answer questions. WHAT A FANTASTIC TEAM!”

And my favourites, from a young person and a child:

“I found the service to be top quality and brilliant. All the nurses and doctors have been supportive and helpful with trying to get me back to normal. I thank them for all their support and wish the same for all hospital patients who are ill and wish other hospitals were like this one!”

And finally, from a 5 year old, in her own hand:“I like it has bit elli put in on miy banth on” (with two pictures of smiley faces).
Someone (?Mum) gives the translation or her own views: “All the staff were amazing especially Sarah who looked after [N]; always friendly and smiling

I REALLY NEED YOUR VIEWS: Take the 2 minute survey

Really need your views! Take the 2 minute survey

Really need your views! Take the 2 minute survey

The Blog has passed 100,000 views- so now I really need your views.

You can have your say by taking a short two-minute survey here: https://www.surveymonkey.com/s/HXSSGHN

What do you think of the blog?
What ideas do you have for it?
What is good?
What is bad?
How would you improve it?
What does it mean for you?

There is a point to it – it will make the blog better; assess its impact; help me write it up in a journal, and it will give other Trusts the chance to see if this is something for them.

You might want to let me know what you would like to see on the Blog; have ideas of how to make it better; have thoughts on a new direction; or anything else. It will probably take about 1 minute of your time and I would be really grateful.

Thanks for all the support so far.

Please Take The CHAPLAIN’S BLOG Survey: 2 minutes of your time will make a difference

Please take the survey at https://www.surveymonkey.com/s/HXSSGHN

Please take the survey at https://www.surveymonkey.com/s/HXSSGHN

I CAN’T BELIEVE IT! 100,000 VIEWS.
It seems like only yesterday since the Blog was born- and six months later it has topped the 100,000 views mark.

So now is time to take stock, and I would appreciate your help.

You can have your say by taking a short two-minute survey here: https://www.surveymonkey.com/s/HXSSGHN

What do you think of the blog?
What ideas do you have for it?
What is good?
What is bad?
How would you improve it?
What does it mean for you?

There is a point to it – it will make the blog better; assess its impact; help me write it up in a journal, and it will give other Trusts the chance to see if this is something for them.

You might want to let me know what you would like to see on the Blog; have ideas of how to make it better; have thoughts on a new direction; or anything else. It will probably take about 1 minute of your time and I would be really grateful.

Thanks for all the support so far.

“And Frankie Makes Three.” Guest Blogger Lisa Ventura on the joys and challenges of pregnancy

Baby Frankie's 23 week Scan

Baby Frankie’s 23 week Scan

Lisa Ventura is this weeks Guest Blogger. In this post she explains how she dealt with the news of that her unborn baby has a cleft lip and possibly palate. It is inspiring; life affirming; energising and beautiful- and I will be following her posts on her blog http://www.babyandcleft.co.uk. Her words speak for her and here is her story – so far…

Proud Mum-To-Be Lisa Ventura

Proud Mum-To-Be Lisa Ventura

“I first found out about this wonderful blog when I saw an article in the Worcester News about it last summer. It was very timely for me as I was going to write to the Worcester News to say a huge thank you to Jane Brassington and the staff at the Early Pregnancy Unit at the Worcestershire Royal Hospital for their support and care in the early stages of my pregnancy, after suffering six miscarraiges over the years. I also wrote to David, who featured my email to him and subsequent letter that the Worcester News printed, and spent hours reading all the positive good news stories contained in the blog.

All was progressing well with my pregnancy but at 23 weeks my unborn baby boy, who my husband and I named Francesco Enrico, was diagnosed with a unilateral cleft lip and possibly palate. I’d had my 20 week anomaly scan at the Worcestershire Royal Hospital where my husband and I found out I was having a baby boy, and I was asked to return at 23 weeks as the sonographer couldn’t get a good look at his heart and face because his hands were in the way. So it was at that 23 week scan that we were told he would be born with a cleft lip and possibly palate.

I was referred for an urgent scan up at Birmingham Women’s Hospital to confirm the diagnosis and was amazed to get an appointment up there literally 3 working days after the cleft lip was first picked up. The scan in Birmingham confirmed the diagnosis – my husband and I were initially devastated. I knew nothing about the condition, and blamed myself for it even though I have never smoked, hardly drank and even gave it up completely before I was pregnant, took folic acid every day without fail along with a pregnancy vitamin and took it as easy as I could during the early days. It was simply put down to “one of those things”.

Once I had come to terms with the diagnosis a little more I came across the Cleft Lip And Palate Association (CLAPA) and got in touch with them . They were incredibly supportive and let me ask as many questions as I needed. The more I found out from them, the more reassured I became. I was astonished to find out that 1 in 700 babies in the UK are born with a cleft lip and palate, and there is no known cause as to why.

With such a high rate of 1 in 700 babies being diagnosed with a cleft lip and palate, I decided to use my skills to raise as much awareness of the condition as possible and provide a much needed support network to parents locally. CLAPA doesn’t have a branch in Worcestershire/The West Midlands and I have been in touch with them about setting this up. If it can go ahead then I hope it can happen in partnership with Worcestershire Acute NHS Trust and through antenatal clinics, midwives and other support networks such as NCT. I am also in the process of hopefully setting up a Happy Smiles group, also in conjunction with CLAPA.

Parents-to- be generally have vaguely heard of the condition but have no idea exactly what it is until they get a diagnosis – I know that my husband and I certainly fall into this category. Coupled with society’s view of perfection and beauty I feel that much needs to be done to raise awareness of cleft lip and palate in Worcestershire and the Midlands. We are fortunate enough to be near one of the best cleft lip and palate teams in the country at Birmingham Women’s and Birmingham Children’s Hospitals, and in the coming months I will be trying to raise as much awareness as possible of the condition through blogging, PR, fundraising, using social media and interacting with parents/children who were born with a cleft lip and palate. In addition, according to statistics from CLAPA that were released at their latest annual conference 60% of parents were unhappy with how their diagnosis was delivered to them. I would like to see some support and additional training for sonographers to help them let parents know about a cleft lip and palate diagnosis in a sensitive and empathetic way.

I was so inspired by the Chaplain’s Blog and the great work that David is doing that it encouraged me to start my own to document my journey as a Mum to be of a baby boy with a cleft lip and possibly palate – http://www.babyandcleft.co.uk. Not only will it be a way for me to share what I’m going through and the journey I’m now on with my husband and my unborn baby boy, but I hope it will become a positive blog containing success stories, good news about cleft children who have overcome the condition and an information resource for parents. I look forward to liaising more with Rev David Southall about this condition, and would love to hear from anyone or any parents whose children have been diagnosed with cleft lip/palate and would like to help me with my awareness campaign, or have their success story featured on my blog.

Please get in touch with me via enquiries@babyandcleft.co.uk – I’m also on Facebook http://www.facebook.com/babyandcleft, and twitter http://www.twitter.com/babyandcleft. I look forward to hearing from you and if any of you out there who have children with a cleft lip/palate, or are expecting a baby with a cleft lip/palate, you are definitely not alone.”

I am hugely grateful to Lisa for this story. And I feel supremely privileged that she would let us see the scan of her beautiful boy.

If you would like your story to feature on the site, or be a Guest Blogger- just post me something via the contact details above.

Finally, if you have two minutes to take a quick survey to make this blog better then please visit https://www.surveymonkey.com/s/HXSSGHN.

100,000 VIEWS!!!!!!! Please take the survey and make the blog better!

Fireworks cluster

I CAN’T BELIEVE IT! 100,000 VIEWS.
It seems like only yesterday since the Blog was born- and six months later it has topped the 100,000 views mark.

So now is time to take stock, and I would appreciate your help.
So if you have enjoyed the Chaplain’s Blog, or have any views on it at all, then please visit the Survey below and let me have your views.

https://www.surveymonkey.com/s/HXSSGHN

You might want to let me know what you would like to see on the Blog; have ideas of how to make it better; have thoughts on a new direction; or anything else. It will probably take about 1 minute of your time and I would be really grateful.

Thanks for all the support so far.

David

Finding Meaning In The Loss Of A Daughter: Saving Others

Catherines Award (from Worcester News) Click to enlarge

Catherine’s Award (from Worcester News) Clicke to enlarge

For the record, I have three children who are ‘oiks’ but I love them! They make me laugh, drive me mad, have made me lose my hair! (actually that’s probably genetic but I blame them) and cost me money! But I wouldn’t be without them.

So I cannot imagine what it feels like to have lost a daughter who was only 38 – but the Amies Family, don’t have to imagine it, because it has happened to them.

Now, I’m no stranger to death- it comes with the territory of Chaplaincy. And every death is a tragedy; no wonder it is called “the last enemy” in some religious traditions. But the passing of a beautiful young woman of 38 seems to me senseless. So much to give; so much to do and experience; and neither my theology, nor any other view of the world, can fully cope with this. Religions tend to speak of a life after death (and let’s hope that’s right) but even if you have another world view, it is possible to make a some sense out of Catherine’s passing, as impossible as it seems. And if that sounds like I’m preaching or pedalling easy answers, I’m not. I’m just conveying what the Amies family say in the article above.

Toby, Catherine’s brother says: “If there is any point to death, especially a death that seems way too soon, surely it has to be to improve life, to urge those of us that remain to live better than ever before?”

Amazingly, Catherine did that as he life ended. By donating her organs she save and improved the lives of five people.

And Michael, her father, has also made the world a better place. He is Chairman of Worcestershire Acute Trust Organ Donation Committee and works tirelessly campaigning to get others to register for organ donation.

Helping someone to live after your death makes a difference to the world. After all my life is diminished by the death of each human being.

To my shame, I realise that I am not an organ donor. But because of Cahterine’s story, today I will discuss it with my family and register for organ donation at http://www.organdonation.nhs.uk.

And so Catherine was posthumously honoured with an award presented to her parents at St. Jame’s Palace; rightly so.

And in a personal email in which Michael invited me to post Catherine’s story, he moved me immensely when he said:

“By all means use it if you would like to! It was a great occasion for us. But mainly for Catherine, who would have loved the ceremony.”

Fining meaning in loss is precarious work. Let this family stand as an inspiration.

Catherine's Parents at St. Jame's Palace

Catherine’s Parents at St. Jame’s Palace