Meeting with National Programme Director for Women and Infants’ Health

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

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

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

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

  

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

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

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

  

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

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

Email: jazminesands@gmail.com

Mother to an angel 

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

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

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

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

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

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

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

Mother to an angel 

xoxox

Campaign Update - Letter to Minister for Health

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

Sent 5/10/2016

Dear Minister,

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

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

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

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

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

Kindest regards

Jazmine Sands 

Letter to Minister for Health Simon Harris

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

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

Mother to an angel xox

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

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. 

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

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

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

NILMDTS

Now I Lay Me Down to Sleep

Capturing Love, Not Loss

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

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

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

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

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

Photos by NILMDTS

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

View their website here; www.nowilaymedowntosleep.org

NILMDTS facebook page click here

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

Request more information. 

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

083 377 4777 or nilmdtsireland@gmail.com

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

The beginning of our campaigns journey TV3 News interview

Monday 5^th September

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

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

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

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

Tuesday 6^th September

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

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

Watch my interview with Paul Bryne on TV3 News 

Click here to watch

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

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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