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 

#isabellaschdawareness#internationalwaveoflight #waveoflight #nilmdtsireland #angelmum #isabella

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mother & brother to an angel xoxox

Campaign Update - 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

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