Tuesday, 13 December 2016

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

Saturday, 12 November 2016

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

Is it just coincidence or is our angel talking to us?



I am a big believer in life after death, I have been since I was a little girl through my own personal experiences, I think when someone close to you passes away you just have hope to have some kind of sign from them to let you know they are ok, but at the same time you do not want to drive yourself mad looking for it and be disappointed if you don’t see or hear from your loved one.

I am open about what I believe in and accept everyone has their own opinions about this topic but I wanted to write about this as I feel many people who has suffered loss always wonders if their loved ones are around them and some may even crave for some kind of sign which is exactly how I feel.

Only last week myself and Kevin were in our local Smyths store starting our Christmas shopping, we don’t get to do too many things with just ourselves as we are always busy so it was nice to have some quality time with just the two of us, as we waited in the queue with our hands full of prezzies I noticed this little girl skipping past me with long dark hair she was stunning, my heart melted and just smiled to myself trying to keep it together in front of Kevin and of course everyone else around me, it was when I heard her mother call her name ‘Isabella’.... I literally lost my breath from the pure shock of hearing her name, I looked directly at Kevin and his face just turn pure white, I wanted to drop everything and run, I could not believe it out of all the names we hear hers, I have never heard her name before as it is unusual which is why we choose it, why did we hear it, how was it that out of all of the places in the shop she said her name right in front of us, we walked out and tears were just pouring down my face feeling the pain of emptiness and realizing that we should be shopping for our 2 children and not one.


 As we drove back I thought to myself, what if this was meant to happen but to not upset us but as a message to let us know she is around us always, I suppose it is turning a negative situation into a positive and seeing things in a different light instead of darkness.

 During Isabella’s burial I asked one of my good friends to arrange a white dove to be released, I thought this could be a symbolic sign for her spirit to be released to the heavens above, my heart melted when she walked up towards us with a beautiful white basket, she opened it up and there the dove looked at us and then flew up into the sky, I looked up and noticed the sun breaking through the fluffy clouds as if an opening appeared welcoming our baby girl.

A few days past when Kevin’s brother said that he went to visit her grave and noticed a white butterfly on her cross, as soon as I heard I liked to think it was her letting him know she was still around, that very same week Kevin was in the garden and felt something on his hand, to his amazement it was a white butterfly, as he told me I could see in his face full of hope that it was a sign but I couldn’t help feel the emotion of jealously, why not me? Why as her mother have I not had a sign, I felt maybe I did do something wrong that I didn’t deserve it, but not long after she did said hello or so I like to believe. 

I remember it was the day of Bike Fest in Killarney, one of Kevins good friends arranged for him to have a tattoo to honor our Isabella which meant the world to Kevin, I remember I was sitting in the garden looking up in the sky waiting to leave, I looked across the garden and there the white butterfly flew across and over the fence, there it was my little sign, a tear ran down my cheek knowing in my heart she was letting me know she was around, that very same day my Nan called to check up on me I remember her words as clear as day, she said ‘ I am sitting here in the sun in my garden and I saw a beautiful white butterfly just came out of nowhere and flew right in front of me and it reminded me of our Isabella’  the phone went quite as I tried to process what my Nan just said to me, did I tell her? No I didn’t, out of anything that could have happened as a sign it was linked to a white butterfly, I then explained to her what has been happening and she said that it sounded like she wanted us to know she is always around.

I know this may sound out there, but isn’t it lovely to think something like this is symbolic, what is the harm in thinking this way? There is no harm in thinking or presuming this being linked but you would have to question is this just a coincidence? or is our little angel talking to us in her own little way, letting us know that she is still around us....well, I like to think it’s her, if you have a loved one and notice a sign, do not just ignore it and think you are just over thinking it, you should embrace it, believe it is a message from above saying hello, they are ok and they will always be around you..



Mother to an angel xx

Wednesday, 26 October 2016

The journey of a grieving mother




 

‘I am sorry but there is nothing we can do to save your daughter’ these are the words that constantly replay around in my head, visions of me holding her with her big beautiful eyes, remembering every single expression she done while here on earth, from the small lines on her forehead as she looked up at me, to her perfectly shaped little mouth that I used to stroke ever so gently. No one can comprehend the loss of your own child unless they have walked the same path, from witnessing her last breath and yet feeling totally helpless as a parent to save her, something that was my duty, a duty to protect a duty that goes beyond anything else, a duty I feel as a mother failed to do.

Since we found out we were expecting, I made sure that everything I was eating and drinking would benefit our baby, I didn’t smoke or drink, I ate more veg, fruit, salad and drank as much water as I could, I stayed at home most of the time but I was happy, happy to ensure that our baby was safe and everything was going to be perfect.

The day we travelled back to Kerry was the same day we laid our daughter to rest, that very same evening we walked into our house, I remember it was quiet, I walked upstairs and there in front of me was the door for her nursery, untouched, everything in place ready for her, I grabbed my stomach and all of a sudden I felt ‘emptiness’, despair, sadness, failure of a mother, I walked into her room, everything was perfectly placed, her cot, changing station, nappies and baby wipes stocked up, even a towel ready by the side for her first wash, I looked down at my hands and nothing was there only drops of my tears. I sat on the floor and cried so hard it hurt, clenching on her blanket so tight, I held it as if she was there, just trying to see if I could feel like how it should be, am I going mad? No, I just could not register that she was gone and I was to never see her again in this life.  I remember the curtains in her room were open, the stars were so bright that night, I walked to the window and felt a wave of calm that she was there with me watching me through the stars.
During her burial I felt I could not let my true emotion out, if I started to cry I was petrified that I would not stop, I would collapse and not get back up, I have this constant feeling that my body had failed my daughter, that it was my fault she is not here today, the least I could of done was be strong for her before she flew with the angles, just like she was strong for us by giving us time.

It has already been 5 months since we welcomed her here and my heart is still so raw, I feel so much fear as time goes on, as my memories of her become slightly more faded, the emptiness has grown even more while I am here at home, I should have lack of sleep, I should be making bottles and have washing so high I don’t know where to start, but as soon as Keelan has gone to school I am left in the house of silence ... I look around and feel deflated, I try and keep myself busy making sure the house is perfect, washing is done but I find myself looking at the time counting down the hours Keelan will be home, to see his smile again, tell me about his day work together on his homework, then its time to make the dinner, Kevin comes home talks about his day I clean up after dinner, chill out then bedtime and repeat all the above. Being at home alday is a constant reminder of someone precious that I do not have, go for a walk I say, it will do me some good, so I do I start to feel positive again, I am walking taking in the fresh air, I then look ahead and see a lady with a pram, my heart races every time, it’s not their fault but in my mind it brings back the constant reminder of my most biggest loss. 

The eagerness of wanting some normality is taking over, I want to get back into work I am ready and so the job search continues sending CV’s and not hearing back makes me feel even more worthless, the recent loss of my granddad who was such a large factor in my life overwhelms me, is my life ever going to give me a break? I know there is always someone else more worse off but this is my feelings, my emotions and my battle as an angel mum which I think many other angel mums could relate too. I envy those people who have their career, see and talk to different people every single day, I am doing everything I can to get back in to some normality but I have to keep reminding myself that things do take time, grief is a process and I am only at the beginning. I have Keelan to think about my son who is my world, so I must try and pick myself up again and so I am starting tonight by going for a long walk, I now want to focus on getting myself fit agian mind and body, i've got to do this, I will do this and any bumps along the way I will jump over them with pure determination.



This is only the beginning of my journey....

Mother to an angel xox

Friday, 21 October 2016

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 

Tuesday, 18 October 2016

Our Wave of Light for Isabella and all angel babies worldwide




As today is International Babyloss Awareness day, we are taking part in the International Wave of Light this evening. As bereaved parents ourselves we join the many other parents of angels from all over the world in lighting a candle for all our angel babies who have changed our lives forever. Today we honour and remember our babies in heaven and let them know we are thinking of them always. Isabella is our daughter in the sky and we miss her so much, love you Isabella with all our hearts xox 

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


Friday, 14 October 2016

International Wave Of Light


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




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

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

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



Let us together send light to our angels 

Mother to an angel xox

Wednesday, 12 October 2016

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

Saturday, 24 September 2016

Campaign Update - Response from the 'Regional Health Forum'


Since our latest post showing a very weak response from the Minister for Health Simon Harris, regarding our meet request which was raised as a Parliamentary Question within the Dail by T.D Lousie O'Reilly,  it was made quite clear that he was not understanding our campaign and that we just wanted to raise our own personal case were in fact we want to highlight concerns we have for the current maternity screening procedures for all expectant mothers nationwide.

Cllr. Damian Quigg who is working alongside us with our campaign attended the 'Southern Regional Health Forum' meeting on Thursday 22nd September. Cllr. Damian Quigg tabled on our behalf the  Notice of Motion which outlines our campaign, see below;

Notice of Motion
That this Forum support my Notice of Motion to put measures in place where all expectant women would receive free routine detailed scans in order to rule any organ deficiencies prior to birth of their child. Cllr. Damian Quigg

Further to the forum's response to the above it is with absolute delight to tell you all that the notion was fully supported by all the members of the Board. This means that it was agreed to call upon the Minister for Health Simon Harris, to meet with us were we would have the opportunity to share our experience, demonstrate the flaws within the current maternity screening and present a much needed change.

See below letter from the 'Southern Regional Health Forum' sent to the Minister. 



We know that there is still a long way to go, however we are heading in the right direction and hopefully a meeting will be arranged very soon. I will also be sending the Minister a letter also requesting for a meeting. 

I just wanted give a very special thank you to, Cllr. Damian Quigg who has given us all incredible support for our campaign, it is such a pleasure to have you by our sides. 

As always we will keep you all posted for any updates, and thank you all for your support.



Mother to an Angel 
xoxo

Tuesday, 20 September 2016

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



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

Email from Louise O'Reilly TD

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

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

Louise O'Reilly TD
Dublin Fingal


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

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

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

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

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




Sunday, 18 September 2016

Campaign Update





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

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

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

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

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

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


Dear Cllr. Damien Quigg

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

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

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

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

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

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

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

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

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

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

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

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

Thank you,
Kind regards
Jazmine Sands & Kevin Sheehan

Saturday, 17 September 2016

Corks RedFM Radio Campaign Interview



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

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

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

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

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

Mother to an Angel
Jazmine Sands

Friday, 16 September 2016

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


NILMDTS

Now I Lay Me Down to Sleep
Capturing Love, Not Loss

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

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




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







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






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

Photos by NILMDTS






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

View their website here; www.nowilaymedowntosleep.org

NILMDTS facebook page click here

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



 Or if you know someone who needs the service of NILMDTS, please contact their central number 
083 377 4777 or nilmdtsireland@gmail.com


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