Thank You To The Cleft Lip & Palate Association

clapa_logoOne of the things I work hard to do is to raise awareness of cleft lip & palate, a conditions that affects 1 in 700 babies born in the UK every year.  If Frankie had been born he would have had this condition, which in his case may have linked to the chromosome 15 duplication that he had, although many babies are born with a cleft lip and palate and have no other conditions or things wrong with them.

I wrote the following account of how I found the Cleft Lip & Palate Association (CLAPA), a charity that is very close to my heart as they were so supportive when Frankie was diagnosed with his cleft lip and palate, and sent it to them to use on their website or other materials to let others know how helpful I found them:

My unborn son Francesco “Frankie” Enrico Ventura was diagnosed with a unilateral cleft lip and palate at the Worcestershire Royal Hospital on Wednesday 25th September 2013 when I was 23 weeks pregnant.  The sonographer who conducted the scan blurted out that he could “see an abnormality” and that it was a “cleft lip”.  My husband and I were completely dumbstruck, we were so shocked at the way he said it that we literally couldn’t speak.  The sonographer went on to ask us if we knew what a cleft lip was, and before we could answer he said “it is like the children you see in pictures in the paper in third world countries where their lips don’t form properly and their teeth grow out in the wrong place.”

Reeling from being told this we were ushered into a room and left on our own for at least 20 minutes while a consultant was fetched.  I was in floods of tears and my husband was doing his best to comfort me, but we were both shocked and devastated at the news that our son would be born with a cleft lip.  All I could see in my head was images of the children he described and I couldn’t stop crying.

A consultant came in and said that she would arrange an urgent referral to Birmingham Women’s Hospital for a second opinion, gave us an poorly photocopied NHS leaflet about cleft lip and palate and we were then free to go.

015We had no idea what we were dealing with, and what it meant for Frankie – my husband and I were scared out of our minds.  Even though the consultant said to us to try and refrain from searching for information about it on Google we are both very inquisitive people so once I had calmed down a little we got my laptop out and my husband typed “cleft lip and palate” into Google.  The first link that came up was to the Cleft Lip & Palate Association website.

We spent hours on the site reading up about the condition, reading accounts from parents that had children with cleft lips and palates, and we gained a much greater understanding of the condition and what it meant for Frankie.  We understood that he would have to have operations from as young as 3 months and possibly right through his childhood to the age of 18 or so, that he would have to have speech therapy and maybe have other things associated with the condition, such as problems with his teeth.  By the time we went to Birmingham Women’s Hospital for our second opinion scan on Monday 30th September 2013, thanks to the Cleft Lip & Palate’s Association website we were very well informed about the condition.

Baby Frankie 23 Week ScanFrankie’s cleft lip and palate was confirmed at Birmingham Women’s Hospital and they asked us to return 4 weeks later for another scan so they could see his cleft lip and palate in more detail when he was a bit bigger.  It was that week that I contacted CLAPA and received a lot more information and support from the staff members, and thanks to them and being in touch with them I started to feel that although it seemed like a huge deal at the time, it was comforting to know that Frankie was 1 in 700 who are born with the condition and that in the grand scheme of things although he would need a lot of operations and treatment, it was something that could be fixed.  I joined the closed CLAPA facebook group and I was overwhelmed and stunned at how much support I received in the group, everyone there was so lovely and so helpful and answered all my questions, and I had quite a few! CLAPA also put me in touch with some of their parent contacts and we met Donna Rushton and her daughter Lucy, and Paul Barrington and his daughter Seren, both of whom were born with a cleft lip and palate.  Seeing such wonderful and happy girls and talking to both Donna and Paul about their experiences reassured us greatly and we felt very optimistic for Frankie after we met them.

1477477_10153523621215106_1954305469_n1.jpgI started a blog in early October called “Baby & Cleft” and my plan was to document everything that happened to Frankie and to me prior to his birth, then his birth up to 5 years old, when I would create another blog called “Child & Cleft”, and finally another blog when he reached the age of 18 called “Adult & Cleft”.  I started off with www.babyandcleft.co.uk and even registered all the other domain names.  I wrote so much about how I felt about the diagnosis, how much I had learnt about cleft lip and palate, how wonderful everyone at CLAPA had been – I couldn’t stop writing!

By the time my birthday came around on October 14th I had pretty much accepted the path ahead for Frankie with his cleft lip and palate, and many of the staff members at CLAPA had become friends with me on Facebook.  I happened to post on my facebook page that I was going to look into getting a 4D scan of Frankie and one of the staff members, I think it was Claire Cunniffe, replied and said that CLAPA funds 4D scans for parents who have received a diagnosis of cleft lip and palate in their unborn babies.  I also had a visit from Jane Tomlinson from the Birmingham Cleft Lip & Palate team, she told me about CLAPA and gave me a leaflet but I was able to say that I’d already been in touch with them.

I emailed Claire Cunniffe and she gave me the details for Babyvision in Shrewsbury, so I booked a scan and my husband and I went up there on Wednesday 23rd October.  To see my son in such detail was the most amazing experience of my life.  We also got a good look at his cleft lip, which did indeed affect the whole of the left side of his lip, but I just fell in love with him so much more than I was already and I couldn’t wait for him to arrive.  We went away with lots of scan photos and pictures of him, and I was over the moon with the 4D scan that CLAPA provided and I couldn’t wait for him to arrive into the world.

I had an additional scan at Birmingham Women’s Hospital on Monday 28th October at this scan it was determined that Frankie’s cleft lip and palate affected the whole alveolar ridge of his mouth and possibly went into his nose.  There was a strong possibility he would have to be tube fed until they could operate and the consultant also detected that he had talipes in his right foot, and he wasn’t sure whether that was positional or not.

hospital5Sadly for us and for Frankie, things took a very different turn when we found out on Monday 25th November 2013 that he would be born sleeping.  After a very painful 3 day labour, I gave birth to Frankie at 4.43am on Friday 29th November 2013.  Our hearts were shattered and broken.

I only held my son for a day and a night, but I was able to dress him, have his footprints and handprints taken, take lots of photos and video, and very importantly for me, have him baptised by Rev’d David Southall, Chaplain at the Worcestershire Royal Hospital.  The following day instead of leaving the Worcestershire Royal Hospital with my son, I left the hospital carrying a memory box.

Again the support, love and compassion that CLAPA and all the members within the closed support group on Facebook was incredible.  I was so touched by all the lovely comments and messages that I received, and I even received some cards in the post which meant the world to me.  After Frankie’s funeral we found out that had he been born it wasn’t just the cleft lip and palate that he had, he had a very rare duplication on chromosome 15, and he would have been severely mentally and physically disabled on top of the cleft lip and palate.  The geneticists we saw said that in his case the cleft lip and palate and talipes was almost certainly linked to the chromosome 15 duplication that he had.

1540361_10153740168810106_199924919_oMy blog “Baby & Cleft” became a new blog called “Frankie’s Legacy”, and we also decided that we wanted to raise some funds for CLAPA to say thank you for all their help and support.  We managed to raise an incredible £1057.62, which we gave to CLAPA in January 2014.  At this point Frankie’s Legacy also became an unincorporated association charity, and one of our charitable objectives is to raise awareness of cleft lip and palate, but also to continue to raise money for CLAPA in the future.  We have a primary fundraising objective at the moment to raise funds to improve the delivery suite rooms at the Worcestershire Royal Hospital, but will look towards raising additional funds for CLAPA when this has been completed.  We are now close to getting our registered charity number with the charity commission, and will continue to work with CLAPA to do what we can to support their awareness raising and to raise additional funds for them.

Thank you CLAPA, we could not have got through the last year or so without you!

clapa-cert

On My Birthday….A Big Thank You & A Turning Point

Quotation-Max-Lerner-life-strength-hurt-Meetville-Quotes-140393So today is my birthday and I’m 41 years old, or should that be 41 years young – you decide.  Today has been a strange day, I was hoping to book the day off work and spend it relaxing, possibly having lunch with my Dad and catching up with some of my family.  Unfortunately it wasn’t to be, as I got a promotion a few weeks ago at the firm of solicitors where I am working and every month I have to present a report to the Senior Partners, and the meeting for this is in the middle of every month and yes, you’ve guessed it, today was the board meeting, my first one since my promotion.

I also had to go to a business breakfast networking event in Worcester, something I like to do as often as I can.  I’m quite well known in the business community in Worcester, so it is good for me to go to some networking breakfast events, talk to people about what I’m doing at the solicitors I work for and also talk to businesses about Frankie’s Legacy and where it is at as a charity.  We are 3-4 weeks away from hopefully getting our registered charity number, and I know that will open up so many more doors for the charity and our fundraising efforts.

I was woken up this morning when my alarm went off but instead of me going downstairs to let my dog out and make a coffee like I usually do, my husband was already awake and ordering me to stay in bed.  He let our dog out and made me a coffee, and came back upstairs with my cards and presents.  To my surprise he bought us tickets to see Status Quo in December, my all time favourite band, flowers and a lovely card.  It brought a huge smile on my face.

After the networking meeting I had paperwork to prepare for my lunchtime board meeting, my phone was going like the clappers with notifications from Facebook with so many lovely people wishing me a happy birthday.  I smiled every time I saw a new notification.  And then I realised something – many of you who posted happy birthday wishes to me on Facebook I didn’t know at all this time last year.  My Facebook friends list was full of shallow, superficial people only interested in using me to bolster their own inflated self-importance and egos. I had just come into contact with the Cleft Lip And Palate Association as Frankie had been diagnosed with his severe cleft lip and palate, and through talking to everyone there and lovely parents on the CLAPA Facebook support group, I got to see first-hand what it was like to talk to genuinely lovely people who had no agenda except wanting to help a mother to be who was scared out of her mind at the prospect of her son being born with a cleft lip and palate.  I’d been burnt so badly by people that I was beginning to think that such people didn’t exist.

How wrong I was.

imagesThe vast majority of you who have posted on my Facebook page today weren’t on my Facebook friends list this time last year.  All the angel mummies, all the parents who have been through early pregnancy loss, stillbirth and neonatal death, all the parents of children with chromosome 15 duplication syndrome, all the parents who have children with a cleft lip and palate….I could go on.  You are all people I have got to know in the last year, many of you I interact with on a daily basis and who say to me when I’m having a really bad day, “It’s OK, because I’ve been there too”, and I don’t feel so alone.  Some of you I have only got to know in literally the past few weeks because of The Butterfly Awards, but you have all already enriched my life and helped me in ways you will never know.  I am so grateful that you are all in my life, and I don’t know what I would have done without you.  I can’t thank you enough for being there, listening and telling me that despite what happened everything would be okay.  You have all restored my faith in humanity and you are lovely, lovely people.

1796629_687902234595477_472112387_nI look out for a lot of you on a daily basis on Facebook.  Sandra*, for example, has a son who has chromosome 15 duplication syndrome and at the age of 19 he has just started having very nasty seizures.  I worry like mad that something will happen to him, and I feel for her having to see her son suffer so much.  Then there is Dawn, a truly lovely lady who rang me when my ex-husband and I split up and talked to me each evening in the very early days of that, and who knows what it is like to lose much wanted babies.  And Lindsay Condefer, who is over 3000-odd miles away in Philadelphia USA, makes my day every day when she posts updates and photos on the “My Name Is Lentil” Facebook page of Lentil the French Bulldog who was born with a cleft lip and palate.  Then there is Martin, who I met in person at the Cropredy Festival in 2007 and who lives in Utah USA, who comments on my posts every now and then.  Devan, who lives in Malaysia and who I got to know when we used to play a Fantasy Formula 1 game together with a group of others online over ten years ago, and who was the first person to wish me a happy birthday because it was October 14th in Malaysia before it was October 14th here, I will never forget that.  And Tony, who played a practical joke on me by ringing me earlier this year saying he was a researcher from Endemol Productions who wanted me on Celebrity Big Brother.  I told him to f**K off before I knew it was him, but oh boy did that make me laugh!  He also sent me some DVD’s for a raffle when I had the launch event for Frankie’s Legacy, which was really kind.  And Leigh Kendall, who I have only been talking to for a few weeks, but who I had the pleasure of meeting in person at The Butterfly Awards and I can’t wait to get to know her a bit better.  These are just a few examples, you all know who you are, and I honestly can’t remember my life before I knew you all.  Some of you I have never met in person, nor am I ever likely to given the distance, but I still look out for you and I still consider you all friends and part of my life.

Unfortunately since I lost Frankie I have still encountered one or two who haven’t been so nice, or who wanted to know me to bolster their own self-importance, but I’m better at spotting these types now and saying, “thanks, but no thanks” and walking away straight away.  I’m a big believer in gut feelings and if it doesn’t feel right, I won’t do it.  And while most charities I’ve interacted with have been lovely, helpful, not competitive and freely gave out help and advice on becoming a charity, best practice and hints/tips, I also encountered one or two who see Frankie’s Legacy as a “threat”, which is a huge shame.  I’m not out to compete, I just want to do the very best for my son and I will help, support and encourage any charity that has similar charitable aims as Frankie’s Legacy – if they want the help, of course.

I know that Frankie wouldn’t want me to mope, or be sad or upset.  I know he wouldn’t want me to dwell in the past or dwell on what happened.   I can’t change what’s happened, nor will I ever forget, I will think of Frankie every day for the rest of my life no matter what.  He was the closest I ever got to being a proper mother, and through him I experienced what it was like to carry a much wanted baby, to feel him kicking and moving inside me, and to experience giving birth.  I was only able to hold him for a day, but he gave me so much.

i_love_my_husband_womens_dark_tshirtDespite losing my precious Frankie I have a lot to be thankful for.  I have a wonderful husband who I love with all my heart.  I have amazing parents who I appreciate more than they know or think and who I also love with all my heart.  I have fantastic family and friends, and I’m happy to have got to know everyone who I talk to online through social media, particularly on Facebook.  We are all united in a way we wish we weren’t – we have all lost a much wanted baby either in the early stages of pregnancy, through stillbirth or through neonatal death or we are united through cleft lip and palate, chromosome 15 duplication syndrome or through circumstances or chance encounters over the years, such as with Martin from Utah and Douglas from Minneapolis.  I met both at the Cropredy Festival in 2007, and I still keep in touch with them today, as I do with others who I have met at Cropedy in the past.

So today, I reached a little bit of a turning point.  I actually feel a little bit like myself again.  Not my old self, I will NEVER feel like I did before I lost Frankie.  That person is gone forever.  It is hard to explain, and I think only someone who has been through it will understand what I mean when I say I feel more like myself again, but not like my old self.   I am so grateful for what I have in my life, and for who I have in it, and what the future holds.

Despite trying again my husband and I have yet to go down the road of having our rainbow baby.  I have been through another loss and suffered the heartache of getting a positive pregnancy test only to lose it literally a handful of days later, a “chemical pregnancy” my GP said, too early to even be called a miscarriage.  I’m back with a fertility specialist and I’ve been referred to Professor Siobhan Quenby at Coventry & Warwickshire Hospital. I don’t know what’s going to happen there, only time will tell.

It is only now though that I am starting to feel OK about not having children, if that is what happens.  It is by no means over for me yet, my husband I will keep trying every month until either we get too old and things start happening with me or we get told by the experts that there is no way it is going to happen.  In the meantime though I am going to live my life as normal, I’ve put SO much on hold in the quest to have a baby and I’ve missed out on so much and so many experiences.  And if it is not to be and we don’t have another baby, then Frankie’s Legacy will be my baby, and I will do my very best for that baby every day of my life, just as I would have done for Frankie.

I am not ready to dismantle his room or have him put to rest with his Great-Granddad.  That will come in time, I’m sure.  I know I am still going to have bad days where I get tearful and sad and can’t think of anything else but my Frankie. I have more milestones to cross, such as his birthday next month.  But for now I’m happy just to feel a bit like myself again after the saddest, most turbulent and devastating year of my life.

And that, to me, is a HUGE turning point….