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 

Letter to Minister for Health Simon Harris

Below is the letter I have sent to the Minister on 5/10/16, I have yet to gain a response however I have amazing people supporting me who are doing everything in their power to push for this crucial meeting that without a doubt must take place. 

I will continue to keep everyone updated on our progress and will continue to drive our campaign this as much as possible. 

Mother to an angel xox

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

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

Let the questions begin 'How was Isabella's heart condition missed'?

Preparing for one of the hardest days but all for good reason and remaining focused for what our ultimate goal is..

July 14th 2016 

Big day tomorrow appointment at Tralee general to get some questions answered about why our Isabella's heart condition was not picked up and why does not every pregnant women receive a detailed scan during her pregancy to ensure that if anything is found, proper procedures are put in place. I will not rest until these are answered and I will not stop the fight for the right to ensure all babies are propley screened. I know it will be an emotional day and that's what I am preparing for but I will not rest until I know, no other parent will have to go through what we have and are still going through xx #chdawareness

One of the hardest days of my life to face into the answers we so dearly wanted 

July 15th 2016

Today was incredibly hard to walk the corridors I walked before heading to Dublin to be with our daughter, the emotions all came flooding back as I remember feeling so scared getting ready to set off and walk into the unknown. I kept my head held high as I knew I was doing this for a reason and that reason was to gain some closure and raise questions as to why and how her heart condition was not picked up.

I went to this meeting with no feeling of anger but a drive to make change within the maternity unit not just local but now nationwide. In our personal case her heart condition was overlooked, and yes it should have been picked up but there is clearly a lack of resource to do this to every patient who is expecting.

Our personal case is now going to be open for review by the unit and full cooperation with the hospital is very positive, I will be contacting all local TD's along with the Minister of Health to highlight this nationwide issue and address the fact that more funding is needed within maternity units to provide a high standard and to ensure proper screening to all women who are expecting.

I have also raised the issue regarding the lack of communication across all departments which can cause destress to patients such as public health nurses not being notified of death and call to arrange appointments as this happened in our case.

I made a promise that this is our mission to make change and our Isabella's short journey here on earth will help make this happen, she's a true angel, my inspiration, i strongly believe she was brought here to us for a reason and only honoured to be her mother. Love her and miss her so much but know she is always around us xxx #chdawareness #heartmummy#mothertoanangel

Jazmine
Mother to an Angel

Email to our local TD Micheal Healy-Rae

Below is the first point of contact I've had with our local TD and this is only the start to try and promote change within our maternity wards nationwide.

Dear Michael Healy-Rae

My name is Jazmine Sands and I have been in contact with your office in recent months since the passing of our baby daughter, Isabella Eileen Sheehan who passed away this year in May. I am writing to you with a heavy heart and with the greatest of hopes that you will hear our voice on behalf of ourselves and other parents who have had to endeavor such a tragic event.

Our story begins when we had our daughter on Monday 23^rd May all was well, or so we were told, she was born and we were told she will be coming home with us on that Friday, my son who suffers from ‘ADHD’ met her and could not be happier to be her big brother, however as the hours passed we were brought into a private room and our whole world came crumbling down around us. We were told that she had problems with her heart and that she had to be rushed to Crumlin, a place we never thought we would ever be in. As I had an emergency c-section I was unable to go with her in the ambulance so my partner had to follow in our car with no idea what we were walking into.

As Isabella was examined in Crumlin it took some time for the doctors to understand the full extent of her heart condition, and as my partner stood by her side I was left in Tralee General not knowing what was happening to my baby, a fear that no parent should have to go through. I made my own travel arrangements to Dublin on Wednesday 25^th May and joined our daughter who by this time was transferred to the ICU unit. It was not until the following day we learned of her condition. We met with our consultant Dr. Orla Franklin who explained that Isabella had ‘Hypoplastic Left Heart Syndrome’ along with other complications with her heart and said that her images had to been sent to Great Ormond Street in London, as she continued she told us that unfortunately as her heart was too bad that they could not offer her surgery and that we must let her pass away naturally. We could not understand how this could be true even when I had many scans during my pregnancy, and also being a high risk patient. How could anyone miss this? Especially when half of her left side of the heart was missing?

Once we tried to understand what was happening we had to explain to our son that his sister was not going to make it, and that she was to fly with the angels soon, we gave him an option to stay at home or come up and say his final goodbyes and to our amazement he chose to come and say goodbye to her as he wanted to be the best older brother possible, and so he along with other close friends and family members came to say hello and goodbye to our daughter. Isabella was truly loved within the small amount of time she had, Crumlin arranged her christening along with a private photographer that same evening. Myself and my partner spent her final hours that night alone with her, we did not let her see us cry, we acted as if nothing was wrong so she would remember our smiles only, until the moment the angels came for her while she laid peacefully on my chest, a moment all our hearts broke, a moment we will never forget as long as we live.

That very morning we were told we had to place her in her car seat to bring her home to Kerry, it broke my heart to see my partner walk out the hospital with our daughter in peace, people looking thinking we were the lucky ones to be bringing our child home, little did they know this was not the case. As we made that journey back down it came to me that I would never want any parent to have to go through such a horrific event. We feel that our Isabella was sent here for a reason, and that reason was to raise awareness, not only for ‘Congenital Heart Disease’ which is ever increasing, but also for the lack of resources maternity units actually have within hospitals.

My question is - how could such a diagnosis be missed? If Isabella could have been saved, she could have died on her way to Crumlin because this was not picked up and the correct resources were not put in place upon birth, it is 2016 by now this should not be an issue to raise, these are our children, are future and they are being neglected by the health service as women are not being properly screened during their pregnancies.

I know the one question which would be asked to me and that is ‘what would of made a difference if we would of known’, and the one simple answer is ‘preparation’, we would of prepared our son to what we would of been walking into, we would not of had baby bottles by the kettle as we walked into the house after her burial, yes the heartache would of still been there but every parent has the right to know what they are facing into for their own sanity. This has caused us emotional damage as parents to understand in one hand she was born healthy, to another that she would not make it.

Congenital heart disease is on the rise, this is not a heredity condition, this is simply caused by a miss communication during the very early stages of pregnancy, which brings me back to the fact every women should be entitled to a free detailed scan by a professional.

I have met with my consultant within the hospital who did confirm that yes the hospital should have picked her heart condition up, however she further explained that the maternity ward does not have the correct resources in doing so and that if such a condition exist that the women must give birth in Dublin.

Isabella’s case in up for review within the hospital to see if possible changes can be made in the future. This is a nationwide issue which must be identified by the health service immediately in order to ensure that our babies, who are our future, are being looked after.

We want to also address that we are not in the process of taking legal action, and do not plan to in the future, we want to work alongside the health service and be a voice for all parents who have experienced a similar heart breaking event.

Our darling daughter Isabella gave us the most precious gift of all and that gift was time and to that we are truly grateful, through this journey she has taught us so much and we know in our hearts her story can help make a change.

Please do not hesitate to contact me anytime to discuss this further, and I look forward to hearing from you.

Kind regards

Jazmine Sands

Reply from Micheal Healy-Rae

Dear Jazmine

I have read your email and it saddens me to think of what your family have gone through in the past few months

I will of course raise this very important issue in the Dail when we resume in the end of Sept and in the meantime feel free to contact me any time if I can assist you in any other way.

Regards

Micheal Healy-Rae

My reply to Micheal Healy -Rae

Dear Michael

Thank you very much for your fast response as I know you are very busy, we truly appreciate that you read our email and that you will raise this issue within the Dail on our behalf as this is a major issue that needs to be recognized urgently. Please feel free to use our story as Isabella has touched so many hearts already and we honestly feel she may help with this ongoing situation. 

Our main goal is to have fully trained stuff to scan the babies heart by the 20th week (a detailed scan), and to raise more awareness for 'Congenital Heart Disease' which is not related to genes, which means heart conditions does not need to be within the families history for the baby to be at risk.

The heart is such a vital part of our body that it should be properly screened so if there is issues present all resources are put in place upon birth. In my mind throughout the pregnancy a designated list of all vital organs should be screened by a professional and signed off, this would eliminate to an extent emergency scenarios upon birth and give the baby more of a chance of survival as there would be time to prepare the resources needed if there was ever anything found. 

I was told that there is currently no one within Tralee that would be able to identify issues with the heart as it is so complex, I have suggested if this is the case can they not send scans to Dublin for sign off? as you can imagine this is a worrying finding. Why does Kerry not have someone who can scan the heart and would also lead to the next question, how qualified are the staff for scanning our babies as Isabella's heart condition was missed. 

There is obviously so much to try and understand what the hospital needs in order to have better screening put in place for our babies and to understand their maternity procedures, again we would like to work alongside the hospital and not against it. I would be more then willing to help drive this campaign to make change so please do not hesitate to contact me if you need my voice from a real life story, 

If you have any recommendations in what I could perhaps do in the meantime, such as publicity then please feel free to advise me as I want to do as much as I can. 

Thank you so much again. 

Kind regards

Jazmine Sands