Campaign Update - Letter to Minister for Health

Email sent to Minister for Health Simon Harris regarding our meet request

Sent 5/10/2016

Dear Minister,

Further to the full support from the ‘Southern Regional Health Forum’ I would like to ask for an  opportunity to meet with you and discuss our campaign which highlights just how crucial it would be to have routine detailed screening available to all expectant mothers.

With a routine detailed 20 week scan put in place this will relieve much strain for Crumlin as plans can be put in place prior to the birth. Currently babies who need immediate medical attention must wait for the arrival of an ambulance then they must be transported to Dublin which can take a considerable amount of time, which in most cases they simply do not have.

If a routine detailed 20 week scan was implemented and a diagnosis was made prior to the birth, a surgical plan can be made and the mother would have the opportunity to make arrangements to deliver her baby in Dublin which would also increase the survival rate of the baby. We understand that our daughter could not have been saved, however we are speaking from our own personal experience as we wish no other parent to have to go through what we have gone through, we are also speaking on behalf of the hundreds of parents who have contacted us and bravely shared their stories of babies who did pass away because a diagnosis was not made.

Minister we ask if you could meet with us at your earliest convenience to discuss our campaign further, we hope through our letter to you, you can understand the urgency to address the current screening procedures and hopefully going forward we could have an opportunity to work alongside the HSE.

Thank you for your time, and we look forward to receiving your response.

Kindest regards

Jazmine Sands 

Campaign Update - Response from the 'Regional Health Forum'

Since our latest post showing a very weak response from the Minister for Health Simon Harris, regarding our meet request which was raised as a Parliamentary Question within the Dail by T.D Lousie O'Reilly,  it was made quite clear that he was not understanding our campaign and that we just wanted to raise our own personal case were in fact we want to highlight concerns we have for the current maternity screening procedures for all expectant mothers nationwide.

Cllr. Damian Quigg who is working alongside us with our campaign attended the 'Southern Regional Health Forum' meeting on Thursday 22nd September. Cllr. Damian Quigg tabled on our behalf the  Notice of Motion which outlines our campaign, see below;

Notice of Motion

That this Forum support my Notice of Motion to put measures in place where all expectant women would receive free routine detailed scans in order to rule any organ deficiencies prior to birth of their child. Cllr. Damian Quigg

Further to the forum's response to the above it is with absolute delight to tell you all that the notion was fully supported by all the members of the Board. This means that it was agreed to call upon the Minister for Health Simon Harris, to meet with us were we would have the opportunity to share our experience, demonstrate the flaws within the current maternity screening and present a much needed change.

See below letter from the 'Southern Regional Health Forum' sent to the Minister. 

We know that there is still a long way to go, however we are heading in the right direction and hopefully a meeting will be arranged very soon. I will also be sending the Minister a letter also requesting for a meeting. 

I just wanted give a very special thank you to, Cllr. Damian Quigg who has given us all incredible support for our campaign, it is such a pleasure to have you by our sides. 

As always we will keep you all posted for any updates, and thank you all for your support.

Mother to an Angel 

xoxo

The beginning of our campaigns journey TV3 News interview

Monday 5^th September

I sat in our living room thinking about this blog I created in memory of our Isabella and promoting awareness for CHD, and the promotion of better screening for expectant mother, I created this blog back in early July and never officially launched it. Around may head it went on, do I launch this blog that spills my heart to the world during the most hardest time of my entire life, would people think that I am dragging our story out and looking for attention? No is the answer, I must do this I have to do this and give my daughter a voice, along with all the parents that have gone through this also, and not forgetting the future parents the ones who may follow down the same journey as we did if I did not speak up. I stared at my laptop for ages, while Kevin sat across from me not knowing what dilemma I was facing, until I looked across at Isabella’s picture in our living room, my heart raced and an over whelming sense of panic of the thought of any baby being brought into this world and not having the optimum care possible because it was not detected, and before I knew it I pressed the button to launch our journey into the world.

One of my Glow heart friends Gillian O’Donoghue messaged me in a matter of minutes and asked if she can share my blog to her ‘Glow Hearts for Crumlin’ page, of course I replied I want everyone to see our journey and help create awareness, amazing messages started to come and my passion and determination grew, grew, I felt accepted, I felt emotional but most of all I felt I had a sense of duty to our daughter and parents across Ireland.

I knew the next step would be to get my marketing head on and draw up a plan for our campaign, an hour past after my post was shared, I checked the visits to my blog from 40 views now at 3,000 views, I could not believe it, then Gillian messaged me ‘In the last hour your post on our page (Glow Hearts for Crumlin) and has reached 5,000 people and has been shared 18 times’ then over night it went up to 14,000 and 50 shares and still climbing. This just proves how many other parents, relatives and friends this subject has touched, there really is an incredible about of similar stories some who gained angels and some still fighting all the way.

12.30pm that very same evening my phone rings and its a private number, who could be calling me?  Paul Byne from TV3 news, he is such a gentleman, he explained that he read my blog and was so touched by our story and wanted to meet with me tomorrow morning Tuesday 6^th September for an interview which would be aired on TV3 news that very same day, I jumped at the chance as I knew this could be such a great chance to start our campaign.

Tuesday 6^th September

The doorbell rings, 9am and Paul and his camera man Rory both came in, he took the time to say how sorry he was for our loss and listened to our story, hanging on every word I said, they set up in our kitchen where I had some of Isabella’s photos and memory box on the table to show them, I remember feeling nervous but I had a sense of calm aswell knowing that I am doing this for every parent and parent to be here in Ireland. The interview started and everything just poured out of my heart, trying my best to push the message out there and for the health service to listen up, take note and make some change.

Once the 12.30 news came on I was shaking, I was actually at home alone just about to watch myself on TV, all of sudden Isabella’s images came up, I had a lump in my throat, I placed my hand over my mouth trying to take in what is happening. My daughter has done this, she is a miracle, once it finished I remember bursting into tears as a sense of our daughter has really gone, I know that may sound crazy but it really sunk in with me at that point, but for some amazing turn around she is most certainly not forgotten.  Throughout the day I could not even tell you how many times my phone rang, radio, TV, press friends, family supporting our campaign and to reach out to the HSE and try our best to put in place a standardized routine screening to all expectant mothers nationwide in Ireland. 

Watch my interview with Paul Bryne on TV3 News 

Click here to watch