Saturday 24 September 2016

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

Tuesday 20 September 2016

Dail PQ & Reply from the Minister for Health (Simon Harris T.D.) for meet request



The first step has been taken to seek a meeting with the Minster for Health Simon Harris, to be honest I was hoping to have received a better response regarding the severity of our current pregnancy screening  routine nationwide. I know I have much trust with the people who are standing by our sides in order to obtain this meeting. Louise O'Reilly TD and Cllr. Damian Quigg have both stressed that they will not give up.Our next step now is to wait for a response from Cllr. Damian Quigg after his meeting at the 'Southern Regional Health Forum' he will be obtaining contact information for me to use in order to receive a response directly from the HSE, I will also be writing a follow up letter to the Minister himself that I wish to meet with him to discuss our campaign and the reasons behind our ultimate goal on behalf of all parents that have had a similar experience and of course those future parents that this could also happen too. 

Email from Louise O'Reilly TD

A chara,
Following on from our meeting, I submitted a pq to the minister, asking if he will meet you. I have attached the response below. I would advise from reading it, that you write/email the Minister seeking this meeting and indeed also do the same of the HSE. You can cc me in on this email or send me a copy of the letter so that I may follow up on this, to ensure a meeting takes place.

I will do everything in my power to help you in your campaign.
Is mise,

Louise O'Reilly TD
Dublin Fingal


QUESTION NO:  1392
DÁIL QUESTION addressed to the Minister for Health (Simon Harris T.D.)
by Deputy Louise O'Reilly
for WRITTEN ANSWER on 16/09/2016 

 *  To ask the Minister for Health if he will meet with a person (details supplied) regarding issues on maternity services; and if he will make a statement on the matter.

REPLY.
At the outset I would like to offer my sincerest condolences to the family involved in this case. While I can confirm that University Hospital Kerry has an ultrasonography service and provides anatomy scans if clinically indicated, I cannot comment on individual cases.

I am not aware of any meeting request from the family concerned to date but any such request can be referred to my private office.  As Minister for Health, I am always open to meeting individuals and organisations who request it but, due to the busy nature of Oireachtas & Government business, it is not always possible.  Should the family wish to request a meeting regarding the care of their baby, they may firstly wish to seek a meeting with the HSE.
Minister for Health Simon Harris

To the Minister 
Minister, I do wish to meet with you to discuss the current screening process for all expectant mothers nationwide. Through our campaign we are speaking on behalf of ourselves since the passing of our daughter and also speaking on behalf of all those parents who feel that such a diagnosis for their babies were missed. All vital organs should be screened to ensure that if anything is present, that proper procedures are put in place upon birth to increase the babies survival rate.
Maternity hospitals in Dublin do currently offer this detailed screening and so this must be made mandatory nationwide. I trust that you now have a clearer understanding about our campaign and hope that you will agree to meet with us soon to discuss this further. 




Sunday 18 September 2016

Campaign Update





Last week since the initial launch of our campaign Cllr. Damian Quigg contacted me after he saw my interview on TV3 News, he explained that through his election to Kerry County Council he gained a position on the 'Southern Health Board' and is fortunate enough to be able to raise our campaign at a higher level. 

It has since been confirmed today that following the email I sent to Cllr. Damian Quigg explaining our Isabella's story, the facts around (CHD) and why it is vital that all expectant mothers should have a standardized 'free detailed screening', that he will be raising our campaign on Thursday 22nd September at the 'Southern Regional Health Forum' meeting in Cork. This is absolutely outstanding progress for the campaign and we could not thank Cllr. Damian Quigg any more for the amazing support he is giving us. Cllr. Damian Quigg will forward the response from the Health Forum to me next week so I will keep you all posted.

As in my previous post regarding the meeting I had in the Dail with Louise O'Reilly TD which 
Cllr. Damian Quigg arranged while we were in Dublin, he advised that as the Dail is currently in recess that Louise O'Reilly TD will immediately seek to arrange a meeting with the Minister for Health Simon Harris, during our meeting it became very clear that this issue has been a talking point and that the Minister would want to learn more, I have made it very clear that I will be part of every step of the process to ensure that our voice is heard and the procedures we request are put in place.

During my visit to Crumlin last week I was very lucky to see Dr. Orla Franklin, literally in the corridor which was pure fate, (a little help from above I like to think). Dr. Orla Franklin was Isabella's Cardiologist and as I explained to her about our campaign she agreed with every word that was said, while she was talking she had as much passion as we do, it made me think that if these scans were put in place and proper arrangements were made prior to the birth then Crumlin would greatly benefit also as they do feel the immense strain when these emergency cases such as ourselves come in without any warning, doctors and nurses scrambling around trying their best to find out what is going on, planning the procedures and even delaying confirmed surgeries to save a life, a life of a baby. I strongly believe that  Dr. Orla Franklin would be a great spokesperson from a medical stand point, she understands exactly what we should have put in place, she has seen these cases all too many times and I know her voice will be heard alongside ours.

So, that's all the news so far, to summarize we are waiting for a meeting to be confirmed with Minster for Health Simon Harris which Louise O'Reilly TD will be actively seeking once the Dail commences again, following on from that Cllr. Damian Quigg will be attending the 'Southern Regional Health Forum' meeting in Cork next week and he will send the response from that to me next week, so keep an eye out for more updates. 

Below I have copied the email I wrote to Cllr. Damian Quigg, highlighting our campaign to present at the 'Southern Regional Health Forum'. 


Dear Cllr. Damien Quigg

I am writing to you following up from our previous meeting in relation to the launch of our campaign for, CHD Awareness (Congenital Heart Disease) and to promote ‘Free routine detailed screening’ to all expectant mothers nationwide.

It has been found that (CHD) can affect one in every 100 babies, which is an incredible statistic knowing how many babies have previously been affected, with a large number of them only being diagnosed days after birth, decreasing their survival rate by more then half. As this is not a hereditary disease this means no previous health problems within the parent’s family history can indicate if such a disease could be possible. (CHD) is caused by a simple miss communication during the early stages of pregnancy, and can be diagnosed during a detailed 20 week scan.

As the heart being the most vital organ in our body, any such diagnosis must be referred to Crumlin during the pregnancy in order for surgeons to gain a clear understanding of the issues present and to outline a surgical plan to ensure all necessary arrangements are put in place upon birth. The mother would then have her baby in Dublin’s maternity hospital within the ‘Coombe’ which is located near Crumlin where the baby would be transferred immediately, however this was not the case for our daughter.

Isabella Eileen Sheehan was born by emergency C-Section on Monday 23rd May 2016 at 12.01pm weighing 5 Pounds and 1 Ounce. Myself and Kevin went to see her early that same morning in the Emly Ward, doctors present explained that everything was ‘perfect’ and they were just waiting for her to suckle before we could bring her home on Friday, our son Keelan who is aged 7 then went to see his sister, it was during this time the doctor advised that they detected a ‘slight heart murmur’ and they were running a couple of testes to make sure everything was fine. Approx 10 hours after she was born a doctor and nurse asked to see myself and Kevin in a private room and explained that her heart condition seems to be much more serious and that she will need to be taken to Dublin as soon as possible. As parents to be told that everything was fine, to the complete opposite we were absolutely devastated, more so that we had to explain the situation to our son who also suffers from ‘ADHD’. Kevin followed the ambulance and arrived in Crumlin appox 10pm that evening to be by our daughters side and to sign any paper work if an operation was to take place.

I had to remain in Kerry because of my C-section however I was told recently that Crumlin had arranged a bed for me in Dublin on the Monday evening but there was a clear miss communication within Kerry hospital to arrange transportation for me. I was later discharged on the Wednesday once I was able to be mobile and relatives arranged a car for the journey on that same day, while I still did not know what was happening with our daughter. The next day on Thursday morning we were told that Isabella had ‘Hypoplastic Left Heart Syndrome’ along with many other complications, they advised that because her heart was too complex that they could not even offer her surgery to save her. Isabella was christened the very next day on Friday and passed away in our arms Saturday morning, to which we then traveled with her back down to Kerry for her burial the same day.

We understand in Isabella’s case there was no possible way they could save her, however in a different circumstance if there was any chance of survival she could have well lost her life in transit on her way to Dublin because her diagnosis was not picked up and no procedures were put in place. Furthermore our surgeon in Crumlin explained that with ‘Hypoplastic Left Heart Syndrome’, there is never a heart murmur present which made Isabella’s case very unusual, only due to her further complications with her heart that this murmur was present, this would lead us to believe that if she had the ‘Hypoplastic Left Heart syndrome’ and no other issues with her heart the condition would not have been picked up after birth, and that we would of brought her home where she would of passed away unexpectedly, obviously causing us emotional distress.

As you can appreciate, Crumlin are already under immense strain and even more so when emergencies like ourselves come in, in many cases as serious as our daughters it takes time to investigate the full extent of the diagnosis and the planning process for surgical options. As Isabella’s heart condition was not picked up during her scans in Kerry, the Crumlin team had to start from scratch and the decision was not made until day 3 of her life. As a mother I feel I lost time with my daughter because I did not have her in Dublin were I would have been if this was picked up.

In respect of the HSE if these scans are put in place they would save an incredible amount of money as parents would arrange for their own transportation to Dublin instead of using the emergency services as necessary, along with many other resources used during an emergency situation.

Since my campaign I have received hundreds of emails from families who have also experienced the very same journey as ourselves with their babies being rushed to Crumlin for emergency operations. I am representing all of these parents along with future families that could walk the same fate as ourselves if routine detailed screening of all vital organs during pregnancy is not made essential within our maternity wards. In recent weeks I have learned that all expectant mothers in Dublin do receive these routine detailed scans, so my question is, why are not all expectant mothers nationwide entitled to them also? All vital organs must be screened to ensure that if anything is present, proper procedures are put in place upon birth.

Our babies are our future Ireland, and they deserve the best care possible upon birth.

I trust that you have gained some insight into our campaign and what our ultimate goal is for all expectant mothers nationwide. 

Please do not hesitate to contact me if you require further information or if you have any questions.

Thank you,
Kind regards
Jazmine Sands & Kevin Sheehan

Saturday 17 September 2016

Corks RedFM Radio Campaign Interview



Since the launch of our campaign to raise awareness for (CHD) and to also promote 'free detailed screening' to all expectant mothers nationwide, we have had some amazing opportunities through the media to share our Isabella's story and begin our campaign's journey.  

We would like to express our appreciation to all the media who listened to the true meaning of our campaign and the goal we aim to achieve. 

Click Here to listen to my full Cork's RedFM interview, @ the time of approx; 021:00
 

Please feel free to leave a comment or click on our 'contact us' page if you would like to email us. 

Thank you all for your support with our campaign and I promise that we will not stop until we are heard and 'free detailed screening' is offered to all expectant mothers nationwide here in Ireland. 

Mother to an Angel
Jazmine Sands

Friday 16 September 2016

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. 



 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 5th 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 6th 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 6th 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



Sunday 11 September 2016

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



Friday 9 September 2016

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


Sunday 4 September 2016

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 23rd 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 25th 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 


Our angel who Stole So Many Hearts..

And so everybody traveled through this journey with us giving us strength at the same time.. 

As proud parents of course the first thing we do after seeing our baby girl is to announce her to the world and that is exactly what we done, we received so many well wishes, texts, calls and those closet were arranging to meet our new family member. Happiness was all around until the doctor asked us to come into a private room and gave us the dreaded news that there was something wrong with her heart and that she had to be rushed to Crumlin. 

Once the initial shock started to sink in, and the fear hit me that things were serious, I remembered that people were arranging to meet her, and she was not going to be here she will be in Dublin, we had to share the shocking news that all was not well and that we needed everyone's prayers, and this is when she stole so many more hearts from around the world. 

FB Post 1. Welcome Isabella Eileen Sheehan (May 23rd 2016)

Jazmine, Keelan and myself are proud to announce the arrival of our little princess Isabella Eileen Sheehan who was born at 12.01 this morning and weighed 5lb 1ounce. 

               

FB Post 2. We need your prayers (May 23rd 2016)

Myself, Kevin and Keelan would like to thank you for all your well wishes, however we would also like to ask for your prayers at this very difficult time as our beautiful baby girl is being transferred to Crumlin hospital as I post this emotional message. May our sweet baby girl get well and come back home very soon. X


FB Post 3. Saying goodbye (May 24th 2016)

#specialmoments keelan kissing his sister Isabella goodbye before her trip to#crumlinhospital #truebrotherlylove #ourwarriorprincess #strongfamily



So as we had to spread word to people that all was not well with our Isabella to ensure no one comes to the hospital and she was not there, soo many people were trying to keep us positive, however my partner Kevin who had to follow the ambulance up to Dublin was not doing so well, he called me once he got up to Crumlin and as the days passed I could hear in his voice that he was crumbling with the fact he could not do anything but be by her side and was unable to help her. 

As I sat helpless in the hospital after my operation I knew I had to do something, so I posted a post on Facebook to help keep him strong while I was not there as I knew people would follow my lead and help me give him the boost he needed. I could not take it that they were both up there without me I had to do something, I had to make my way to Dublin and with the help from my mum and her sister in law I did just that. That same evening my mum arranged a lift to Dublin for me in the morning, I spent time with my son in the private room for a couple of hours not knowing when I would be back down and then the following morning I signed myself out of there and made the journey to them, not knowing what I was facing into. 

FB Post 4. Keep strong (May 24th 2016)

This man is my rock, my best friend, my everything. I am so so so proud of you supporting me while having our beautiful little girl last night to holding my hand today and telling me that everything will be ok, that I should rest after my operation and that you will be by our daughters side in Dublin while she has heart surgery, and that you will make sure that she will come home to us stronger then ever. I could never ask for anything more of you then the love and support you show to me and your children every single day... your our true hero xxx







FB Post 5. Our Warrior Princess (May 24th 2016)

Our little warrior princess xx


FB Post 6. I have arrived! (May 25th 2016)

And so I have arrived to be reunited with my precious baby girl.
Mummy and daddy are going to be by your side and get you all better so you can come home soon xx


I remember this day so clearly, you know and hear of Crumlin but never in your wildest dreams would you think you would have to go there. I couldn't imagine what it would be like in fact all that was going through in my mind was to just get to Isabella, and Kevin so I can start to understand what is going on. I arrived on the Wednesday around lunch time, it was so busy, there was no parking anywhere, eventually I got to walk into the main reception waiting for what felt like hours but was only minutes to see Kevin walk in, his face looked pale and tired, I remember still being in so much pain but I just wanted to see our daughter, I had it in my head that I did not want her seeing me looking weak, I was her mother and I wanted to be strong as could be. I walked into ICU for the first time looking round at all the babies then finally I saw her. 

By the next day we were told the news that no parent should ever have to hear, 'We are sorry but there is nothing we can do for your daughter' I remember I had a note pad a pen ready to write down the plan of action to save her, but there was no plan, no hope and no action to be taken, god has written her fate and she is just too good to be here. Every moment we had was precious and everyone of our friends and family still had hope but we knew soon she would be growing her wings. 

FB Post 7. The time in near (May 27th 2016)

Our darling girl, who is giving us extra time to spend with her before she flys with the angels. Thank you all for your kind words and support through this heart breaking time. We will be bringing her home soon


FB Post 8. Those Precious Moments (May 27th 2016)

Isabella opened her eyes for mummy and daddy last night, absolutely amazing. This is going to be the hardest day of our lives but my god we are so grateful to be blessed with these precious moments. Thank you my darling girl.


FB Post 9. My Princess (May 27th 2016)

My princess, feeling blessed to have these precious moments with her xx she just amazing xx


FB Post 10. Mother Daughter time (May 27th 2016)

Our Isabella xxx




FB Post 11. Time is all we ask   (May 28th 2016)

Cherished moments with our Isabella, our girl is amazing and still giving us time to be with her xx


FB Post 12. And So Isabella Grew Her Wings  (May 28th 2016)


Our beautiful Isabella is now sleeping and is flying with the angels. We will love her and miss her always, now we will begin our journey home with her where we will lay her to rest this evening at 4.30pm at Dromavalla Cemetery in our home town of Killorglin. Thank you all for the support you have given at this very difficult time. Kevin Sheehan, Jazmine and Keelan xx


FB Post 13. Isabella's Journey  (May 28th 2016)


Isabella's journey.....

I just wanted to say thank you so much for all the support and words of encouragement we have recieved this week, it really and truly means the world to us. I strongly believe our little Isabella brought us on a journey which we will treasure forever, we have met some amazing people along the way and have seen the work of all the staff from Crumlin hospital who we are utterly grateful for.
From when she was born we had no idea that she suffered from a very rare heart condition with added issues which even surgeons have not seen before, from smiles to tears and watching her placed into an ambulance while daddy followed her to Dublin was the hardest thing we have ever gone through as a couple. Kevin watched over our princess while I recovered from surgery.

Once reunited again we promised that we would stay strong for our little girl and give her the best chance possible, but unfortunately this was also taken from our hands as after the hardest meeting of our lives, the doctors explained that they could not fix our baby girls heart. From this moment on we knew we had to treasure and record every moment with her. Our little girl is an inspiration to us, she stayed strong so she can meet her family, be christened, gave us smiles, opened her eyes, and finally last night myself and Kevin were able to spend time alone with her having lots of cuddles, kisses and making happy memories. She was on my chest when the angels picked her up and lifted her up towards heaven with her daddy by her side.

We as parents are so proud of the strength that our daughter showed, and in a matter of days she gave us everything we could possible ask for and more and for that we are truly grateful.

We are at peace and united as a family who will never leave eachothers sides and for now are little family has gained an angel xx






FB Post 14. Isabella comes home (May 28th 2016)

Our darling Isabella's journey will end as she is layed to rest this evening at 4.30pm at Dromavalla Cemetery in our home town of Killorglin. Family and friends welcome,  thank you all again for your amazing support xx

FB Post 15.  Life's Lesson (May 30th 2016)

I've had alot of people say how strong myself and Kevin are being but we are only going on the power of love and time. Through every heart break there is a silver lining, a lesson to be learned. 
Our love for our daughter was instant and everlasting, and time was only a number but the precious moments created will live on for eternity.

Lesson learned, seeing the side of families fighting for their children's lives everyday and asking themselves is this the last surgery or even their last day. I am truly inspired by any parent having to go through any level of sickness or condition with their child on a daily basis, these children are true warriors living a fight every second of every day.


No one feel that they can't talk to us about our Isabella's journey, we want to keep talking as its what makes us strong, we want to raise awareness for any parent that has or is going through the same pain. She left a legacy of her own, an imprint on all our hearts and I am blown away from all the messages and support.


We are blessed with two beautiful children, and to that we are truly grateful xx #isabella #isabellasjourney



Truth be told, there maybe people who judged the way I was open throughout our entire journey and perhaps it would of been different if we didn't post her arrival, but in all honestly the messages of courage really did help give us more strength, it may not of been a fairy tale ending but she still inspired many people and stole their hearts. Isabella is alive in us all who got to travel this journey with us and we know that our little angel was sent here for a reason and now its my mission to be her voice to speak up and create more awareness for 'Congenital Heart Disease' and try and communicate with our health service that all ladies who are expecting should be properly screened  to ensure that appropriate resources are put in place for our babies upon birth if there is a health issue. 

Jazmine 
Mother to an Angel