Universal access to Foetal Anomaly screening to be made for Women Nationwide

Myself and Kevin are delighted to announce the passing of a Dail Motion by Sinn Fein’s Health Spokesperson T.D Louise O’Reilly who highlighted the current issues within Irelands Maternity Services. The motion included universal access to foetal anomaly screening across all Maternity Hospitals Nationwide, the full implementation of the National Maternity Strategy and a commitment to work with nursing and medical unions in the recruitment and retention of medical staff so that all maternity hospitals meet the ‘Birth rate plus standard’ for midwifery staffing, as well as international standards for consultant obstetricians and gynecologists.

Louise O’Reilly has called on the Minister for Health to swiftly implement the commitments made in the Dail with regards to the National Maternity Hospitals, she said that it is now up to the Government to stand by their commitment and that she will be following up with the Minister to ensure implementation of these incentives. This is a major victory for Women’s Health and the Minister must now accept the collective will of the Dail and act on the motion.

Words will never be able to describe our emotions, we are still travelling through our journey of loss, but we will always truly believe our angel was sent to us for a reason and this news just proved that.

Since the day I received a message from Cllr Damien Quigg who showed so much compassion for our campaign and pure dedication we believed as a small group of people we can make change. Cllr Damien Quigg connected us with T.D Louise O’Reilly during our Dublin visit for my Ireland AM interview, and I will always remember sitting in the room with my good friend Shauna, a fellow heart mum while we both told her our stories, I knew instantly from her reaction that she would not rest until our voices were heard and that is exactly what she did.

All those parents who spoke out about their heartbreaking experiences, the media who took it in their stride to share our journeys, to Cllr Damien Quigg who supported our campaign and set us in a direction were we would not have been able to go without him, and to T.D Louise O’Reilly who made not only our voices heard but the voices of all our angels in a place where change can be made, once implemented babies lives will be saved as a diagnosis will be made prior to birth, and parents to be, will be getting the service they deserve.

Its been such an incredibly hard time for us this last year and our Isabella’s birthday and anniversary is only around the corner but I truly hope with all my heart that she knows she helped make this change. 

In memory of our Isabella, our very own 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

The months after is when you need support the most

I know it has been a while since my last post, but I don’t want to just write every week, this is a real life journey and I only write when I feel it is the right time to share  my recent experiences I’ve had while living life after great loss.

Everyday life since losing Isabella has changed, small things you don’t notice during your daily routines all of a sudden becomes a big deal, at one point I felt every time I left the house all I would see is babies and baby stuff everywhere; my anxiety grew so much I just wanted to stay at home all the time, my house became my sanctuary for me, my haven, my own space to lock myself away from society, I would always say to myself, ‘how and when will I start to cope’.

(In recent months i’ve found grief is truly like the ocean, it comes in waves and sometimes can consume you when you least expect it, don’t fight your emotions, roll with them like those waves, the more you fight and hold back the worse you will feel to which point you may sink into the deep dark obis of depression.)

I wake up every day to my routines of life itself, then all of a sudden it just hits me that I lost my daughter and will never be able to hold her in my arms again, it really does consume me at different times of the day but I am still learning to remind myself of the fact we had the chance to look into her beautiful eyes, while she stared right back at us knowing that she was loved unconditionally, these thoughts are what keeps me looking forward.

The support we had after Isabella was born and when she grew her wings was just amazing, our close friends and family helped organise her burial and really showed so much love and light during a time of such darkness. The following weeks we had people calling to our house on a daily basis which kept us going but looking back now I can see that it hadn’t sunk in still, we were numb, in shock, I knew what had happened but I hadn’t processed the fact that we have lost our baby girl. I do think that if it wasn’t for Keelan I could have sunk much lower, but this is a point you feel you’re at a cross roads and must try your best to continue on and learn to live your life after such a loss. I remember so clearly waking up the following morning after our final goodbye, the sun was shining so bright through our curtains, we just laid there in silence, in a state of shock not knowing what to do with ourselves, the door bell rang constantly by people calling to us, and at the time I just wanted to be left alone, but I got up as I did not want to look weak and then dived into washing all our clothes from Dublin, I washed the same clothes 2 or 3 times just to keep myself busy, as crazy as it sounds thinking about it now I just wanted to feel human again, I was trying to imagine that I would be doing this if she was still there and asleep in her mosses basket, I just wanted to feel like a mother to a new born baby while trying to block out the pain in case I fell apart even though inside I was broken, empty and felt useless.

I have come to the realization that support is needed more than ever months after losing a loved one, most people would presume as months have passed you start to learn how to cope, as they say ‘time is a great healer’ which it is very true however, emotions would start to sink in during the later stages of grief, when your days quieter down and people stop calling as much, this is when you have more time to think to yourself about what has happened, this is the crucial time you will need support.

I am so thankful for my group of close friends who have been travelling this journey alongside me, who knows when I am having a bad day or week, who would call for a cup of tea to talk about everything and listen to me, or just sit there in silence with me just so I feel their company there with me, letting me know I am not alone. I feel it is very important to share this if you know someone who is currently grieving that support is very much needed when months have passed, whether it’s a call, a text or just passing through for tea anything just to show that someone is still thinking of you would mean the absolute world, I know this because it means everything to me and has helped me get through the dark days.

If you are the one going through the pain of loss you must keep talking and if you need someone to listen to you, you must pick up your phone or call to your friends or families house because talking is key to a healthy mind, remember it’s not getting over something like this it is learning to cope with it, this is what I have learned so far and still have so much to come. 

Thank you to my friends and family xoxox

Isabella's CHD Awareness & Pregnancy Screening Campaign Video ~ Please share

I created this video to help promote our campaign for all women in Ireland to be entitled to a
 ' free routine 20 week scan'.

When our beautiful baby Isabella was born we were told everything was fine until a few hours passed and she had to be rushed to Dublin finding out that she had Hypo-plastic Left Heart Syndrome along with many other complications with her heart, they could not offer her surgery and so she grew her wings 5 days later. 

Isabella's fate could not have been changed however if it could have been different and she could have had surgery she could of well passed away upon birth as her heart condition was not picked up as this simple scan is not offered to all expectant women in Ireland. 

We do not want any other parent to go through the journey we have and are still going through.

We are waiting for Minister of Health Simon Harris to listen to our story and hopefully together make some change for our future babies of Ireland.

Please share, thank you 

Mother to an angel xx

A brother’s love for his dying sister – how to explain the inevitable to siblings

Many people have asked me, how we handled our son Keelan when the doctors told us about Isabella, and the answer I always give is we were honest with him from the start.

I suppose the hardest part was knowing that Keelan already said hello to his sister and that we told him already that his sister was coming home that Friday, he was so excited becoming a big brother, I remember sitting on the bed with Keelan after he saw Isabella with his dad when the doctor and nurse came into the ward and asked to see myself and Kevin in a private room, my heart sank as I knew there was something serious wrong by the look on their faces, I looked at Keelan and he had the biggest smile on his face not knowing what was happening,  that is what gets to me more about her heart condition not being picked up, our son had to suffer the rollercoaster ride of emotion, something no sibling should ever go through.

After we were told that she appeared to have complications with her heart and that she was being sent to Crumlin, we were in a state of shock, how could our precious baby girl who looked  perfect and healthy have something wrong with her? How serious is this? Is this life threatening? How are we meant to go out of this room and explain to our son what is going on? Is he going to understand? All of these questions were running around in our heads, I wanted to go with her in the ambulance but I was not aloud after surgery, Kevin had to go up alone in case paper work had to be signed but I don’t want him to be alone and I don’t want my baby girl to not have her mum next to her. You simply cannot process anything, all I knew is that I had to be truthful to Keelan, he is 7 yrs old and has a good understanding about life itself, I strongly believe as it was his sister he had the right to know the truth, if I tried to sugar coat this it would be so much harder for him to process if anything was to happen which at the time I would of never dreamed of.

We sat Keelan down and I said that the doctors have found that Isabella’s heart is very sick and they are going to send her to a very special hospital in Dublin where they are going to do everything they can to make her better, but there maybe a chance she may fly with the angels. It took all my strength not to collapse on the floor in front of my son, but if I looked strong, he will be strong, he replied and said ‘ok mummy, I will say a little prayer for my sister to get better so we can bring her home. As I stayed in Kerry hospital for the next two days I spent as much time as possible with him as I knew once I get to Dublin I wouldn’t know when I would be back down, the night before I left my mum brought him down and I asked for her to go back to my house to collect more stuff and to leave Keelan with me, that was quality time we needed and time which became so important to ensure that he understood what was going on.

I remember months prior to having Isabella my granddad (Keelan’s great granddad) was very ill with cancer, I knew I had to prepare Keelan for the inevitable, we visited him in the hospital but once he really started to deteriorate I didn’t have the heart for Keelan to see him anymore, I wanted him to remember him looking well and able to crack his jokes as always. To prepare Keelan I got him a book about life and death so he would have a greater understanding for the sad time that I knew was upon us, this really did help him, however I never knew that this would be of use to help him through losing his baby sister.

As I was in Crumlin Isabella’s condition is looking more serious but we had yet to find out what was going on, until we had our meeting with her doctors and was told that there was nothing they can do. Our hearts broke into a million pieces; Kevin looked at me with despair and said ‘how are we going to tell Keelan’ I said ‘the truth’. At first Kevin was hesitant to let Keelan come up but I said we must give him a choice, he will never get a second chance to say goodbye. I remember being at Kevin’s brother house Micheal who is Isabella’s godfather, he lived down the road from Crumlin so we were staying with him, he looked after us through our entire journey, he sat us down in the living room and then we made the phone call, we had him on speaker phone both trembling with immense sadness and fear in how we are going to tell our son what is going on and how is he going to react. Kevin talked first then paused, he couldn’t go on, I took over and started to explain, I told Keelan that the doctors could not fix Isabella’s heart because it was too sick and that she will be flying with the angels soon, the phone went quiet, I continued and said that we are giving him a choice if he would like to come up and say goodbye or if he wanted to stay at home? He replied that he wanted to be the best big brother and say goodbye to his sister, we was incredibly proud of him as we knew that this was no easy decision to make for a 7 year old.

Keelan came up on the Friday with all of the family, amazingly Isabella gave us precious time so that Keelan had a chance to say hello again and give her cuddles and kisses before she grew her wings. She was christened at 4pm and we had a private photographer from NILMDTS to take photos of her later that evening in her final hours with us, photos of Keelan holding her, and our little family altogether which will forever be cherished, making those memories that will now last a lifetime.

Isabella passed away early Saturday morning on my chest, we brought her down to Kerry for her burial that same day, we brought her down to Kevin’s dad house in Killorglin, so many people were there wanted to pay their respects, Keelan wanted to help his dad place her in her little pink casket, something that I would never expect for him to do but he wanted to, a sense of a duty being her older brother. She layed there just looking like she was sleeping, so beautiful and at peace, that was when it finally sunk in what had happened, myself, Kevin and Keelan broke down together holding each other so tight, a bond that will never brake. We did choose for Keelan  not to attend Isabella’s burial as he had already been through so much at this stage we felt that he said his goodbye’s and now it was our turn to say goodbye.

Kevin walked out of his dad’s house holding little Isabella’s casket so tight in his arms, while I walked behind him, the sun shining down on us, the clouds were so fluffy in the sky, the river was sparkling and so many swans gathered around the water’s edge, now it was time for us to say goodbye to our darling Isabella.

I wanted to share this as I feel it is so important to see from personal experiences how we as parents dealt with a situation that was thrown to us, everybody has their own ways in parenting, but I just wanted to show that being truthful to our children is the best way for them to learn about life and death and how they begin to process this in their own way. We all want to protect our children from pain and never want to see them cry, but I think if we tell them nothing bad is going to happen and it does, it could create a full sense of confusion and leave them thinking negative thoughts about every situation they are told 'everything is ok, and you don’t need to worry’ but if you sew the seed of maybe this could happen but they are in the best care possible, this not only tells the truth but also adds a percentage of preparing for the worse. This can be relating to any family member, friend of family or even the families pet.

I like to say ‘preparation is key’ and it is especially for siblings in circumstances like ours, this is why our campaign is so important to get through to the Minister for Health that if Isabella’s heart condition was picked up, and knowing that she could not of been saved we could of prepared Keelan for the worse, however because the resources are not available to us within the hospital our son said hello to his healthily sister then days later goodbye, if that is not confusing I do not know what is and all because our health system failed us. We know our Isabella could not have been saved, however we want to save any other parents from the heart break of what we have gone through.

Mother & brother to an angel xoxox

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

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 

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   

☺