Meeting with National Programme Director for Women and Infants’ Health

Well since we started our Isabella’s campaign to raise awareness of CHD and promote that all women in Ireland should be entitled to the 20 week screening, we’ve received continual support from many families who have travelled a similar path as myself and Kevin, I feel through our own pain like many others are going through, it helps to speak to those who know and feel the same heartbreak.

Reading peoples stories, some with happy endings and others with sad, it really has given me even more drive to push this as much as we can. I still remember writing all our memories of Isabella to try and keep her alive in us, and even though she was only here on earth for a short time she incredibly left her mark.

With the help of the media making our voices heard the HSE are now listening.

Since we gained a response from the Minister for Health Simon Harris I received an email from Kilian McGrane, who is the newly appointed ‘National Programme Director for Women and Infants’ Health and will be rolling out the programme to introduce the 20 week anomaly scan to all expectant mothers nationwide . Minister Simon Harris forwarded my email to Mr McGrane and asked for him to meet with me regarding our campaign for anomaly scanning.

  

In recent weeks Mr McGrane has contacted me and welcomed an opportunity to meet with me to discuss the important issues raised in my email to the Minister.

I will be meeting with Mr McGrane at Tralee University Hospital on Wednesday 22^nd February, he will also be joined with the recently appointed clinician, Dr Peter McKenna, who is the Clinical Lead for the Programme.

In the meeting I will be giving an insight from a parents perspective from our own personal journey and what we feel needs to be addressed, from the much needed scan to  also highlighting the lack of after care service to families whose baby passes away, specifically for parents and the siblings.

  

If you have had a similar experience or know someone who has and would like to raise any questions please feel free to contact me prior to my meeting and I will ensure your voice is heard.

I will keep you all updated, and I know Isabella will be with me.

Email: jazminesands@gmail.com

Mother to an angel 

Equal access to standardized ultrasound services to be implemented throughout all maternity units

I am delighted to announce that since our campaign started for the right of all expectant mothers to be given routine detailed screening, we are finally seeing progress made. Minister for Health Simon Harris emailed me today confirming that the HSE National Service Plan 2016 committed to the planning and development of equitable access to antenatal anomaly screening throughout all maternity units in the context of emerging maternity networks.

In addition, the National Maternity Strategy is now clear that all women must and will have equal access to standardized ultrasound services. This strategy will be implemented on a phased basis over the coming years which will be led by the National Women & Infants Health Programme.

The newly appointed Director will be meeting with me in due course to discuss the strategy going forward, in this meeting I will be also highlighting the after care service for families who suffer loss of their baby, which through our own experience is seriously neglected.

Words cannot describe how we are feeling now, from such a dark and sad time in our lives our beautiful daughter shed some light from heaven, I knew in my heart she was sent here for a reason, I am so proud of our angel. Our campaign was never darkened around negativity, through our experience we saw a fault in the health care of maternity services and in our daughters memory we simply did not want anyone else to go through what we and many other families have gone through. I have always said that we wanted to work alongside the HSE and not against it and now they have started to implement a plan for all expectant mothers to receive routine anomaly screening nationwide so if anything has been detected proper procedures can be put in place before birth giving all babies a fighting chance.

I am blown away from all the support we have received since Isabella was born and when she grew her wings, I am so proud to be her mum, she is around us always and throughout our campaign this miracle has just proved it.

I will keep you all updated on further progress as this is only the beginning. 

Mother to an angel 

xoxox

International Wave Of Light

October pregnancy and infant loss awareness month
Light a candle on Saturday 15th October at 7pm to honour all angel babies  

As October is pregnancy and infant loss awareness month, we as angel parents are taking part in the 'International Wave of light' event and would like to invite all our friends, family and all those who have gained an angel baby or child. 

Lets shed some light to create awareness and support to those who have walked the same path as us of loosing a child, lets honor and remember our beautiful angels in heaven, please join us by lighting a candle tomorrow (Saturday 15th October) at 7pm (GMT) for at least one hour.

Join people worldwide to help create awareness by posting a picture of your light on your facebook page and share with us on our Isabella's campaign by clicking here and remember to include hashtags #internationalwaveoflight #waveoflight #angelbabies #nilmdts

Let us together send light to our angels 

Mother to an angel xox

Now I Lay Me Down To Sleep - Our photographer for Isabella

NILMDTS

Now I Lay Me Down to Sleep

Capturing Love, Not Loss

Once we were told on that fateful day that there was nothing they can do to fix our Isabella’s heart we did not know what to do next, in fact we were frantic as we knew time was stolen, every minute we had her here we wanted to try and do everything we can for our family and close friends to meet with her and capture every little expression she gave us onto camera before she grew her angel wings.

As I have constantly said throughout our campaign, the Crumlin staff has been and still are absolutely amazing and truly gave us a little light at such a dark hour. They explained that they can organize a christening for her and also a private photographer, I must admit I was taken back a little of the thought of having someone come in and take photos of our dying daughter or even if she had already passed away, as I tried to think it through all that was going around in my head is that her big brother needs pictures of her, we need pictures of her, this will be a once in a lifetime opportunity, there would be no going back if we changed our minds and if we did not like them then we don’t have to look at them, but my goodness I am so pleased we went ahead and had them done.

Our photographer Michelle came in and she was so respectful and instantly put us at ease, she took photos of her little teddies, her hands and feet and then started to take photos of our little princess with us by her side, Isabella was amazing and gave us this extra time to get these photos done of her within her final hours. There was a sense of calm while we were having our photos taken and it was as if time was frozen, and now we can look back at these precious moments and have a sense that she is with as always.

Her big brother keelan said ‘I miss my sister Isabella very much, she is still part of our family because we have these photos that the lady took of her’.

NILMDTS gave us a chance to capture our daughter’s expressions and most beautiful eyes, we truly feel blessed to have her pictures to look at, and we feel so grateful to know that our son Keelan will have these to remember her by.

Photos by NILMDTS

NILMDTS Mission is to introduce Remembrance Photography to parents suffering the Loss of a baby with the Gift of Professional Portraiture.

View their website here; www.nowilaymedowntosleep.org

NILMDTS facebook page click here

If you would like to volunteer to become a NILMDTS photographer or if you would be interested in learning more about various volunteer roles nationwide here in Ireland or worldwide click here to find out how to be part of this amazing organization. 

Request more information. 

 Or if you know someone who needs the service of NILMDTS, please contact their central number 

083 377 4777 or nilmdtsireland@gmail.com

 A special thank you to our photographer Michelle and all at NILMDTS, you gave us a little light at such a dark time, you let us create memories and keep them for a lifetime and to that we thank you.

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

Our meeting within the Dail with TD Louise O'Reily

To all our amazing supporters, I just wanted to say thank you so much for all your kind messages we have recieved in the past few days. Our Isabella's journey has certainly caught much needed attention from all over the world regarding the current screening process of all expectant mothers nationwide here in Ireland.

I would like to announce that during this week we had a meeting with Louise O'reily TD who took her time to listen and express a mutual understanding with regards to the current issues raised and will be asking the Minister of Health Simon Harris to meet with us and to listen to our experiance and how we feel that every expecting mother should be given a detailed free screening during her pregancy, this will ensure that proper procedures can be put in place if any congenital defects were found.

We know we have a long journey ahead of us but our aim is to ensure that  there is a high level of standardised maternity care across Ireland.

We will keep  you updated and thank you  again and also thank you to Cllr Damian Quigg for setting up this meeting  and taking your time to meet with me.

Mother to an angel
Jazmine

Join 'Isabella's CHD Awareness & Pregnancy Screening Campaign' Group

Ok, so here we go, after an amazing but very busy week we have now finally launched our campaign page, so please share as much as possible, this is a public group and all is welcome to share your own personal stories to help drive our campaign, together lets help create awareness and promote better 'free' detailed screening for all expectant mothers nationwide.

Click here to join our campaign group.

A Poem For Our Isabella

Help Support Crumlin

Supporting #crumlin

Please help support #Crumlin because 'Every sick child deserves every chance'

I am selling raffle tickets to help raise money to rebuild Crumin's Nazareth ward where the tiniest and sickest babies are treated. This ward has helped care for babies like Zoe who was born at just 24 weeks old, amazingly she is now 19 months old and has defied the odds. The Nazareth ward is one of the oldest wards in Crumlin and is in serious need of an upgrade, and with our support we can be part of this journey to help Crumlin give the ultimate care to the most sickest of babies. From first hand experience we know the care and attention all the Crumlin staff give, and have been blown away from the support we continue to receive even after our Isabella grew her wings. I have just 32 tickets to sell each at just €3 or 2 for €5 all tickets are placed into a draw to win a brand new Ford Focus.  #mothertoanangel #crumlin #childrenshospital #raffle

Please feel free to contact me if you would like to purchase a raffle ticket to help Crumlin raise money for their Nazareth ward, I've already sold half the ticket's so make sure to get yours ASAP.
Email me on; jazminesands@gmail.com

Words for our angels