Sunday, 4 September 2016
Email to our local TD Micheal Healy-Rae
Dear Michael Healy-Rae
My name is Jazmine Sands and I have been in contact with your office in recent months since the passing of our baby daughter, Isabella Eileen Sheehan who passed away this year in May. I am writing to you with a heavy heart and with the greatest of hopes that you will hear our voice on behalf of ourselves and other parents who have had to endeavor such a tragic event.
Our story begins when we had our daughter on Monday 23rd May all was well, or so we were told, she was born and we were told she will be coming home with us on that Friday, my son who suffers from ‘ADHD’ met her and could not be happier to be her big brother, however as the hours passed we were brought into a private room and our whole world came crumbling down around us. We were told that she had problems with her heart and that she had to be rushed to Crumlin, a place we never thought we would ever be in. As I had an emergency c-section I was unable to go with her in the ambulance so my partner had to follow in our car with no idea what we were walking into.
As Isabella was examined in Crumlin it took some time for the doctors to understand the full extent of her heart condition, and as my partner stood by her side I was left in Tralee General not knowing what was happening to my baby, a fear that no parent should have to go through. I made my own travel arrangements to Dublin on Wednesday 25th May and joined our daughter who by this time was transferred to the ICU unit. It was not until the following day we learned of her condition. We met with our consultant Dr. Orla Franklin who explained that Isabella had ‘Hypoplastic Left Heart Syndrome’ along with other complications with her heart and said that her images had to been sent to Great Ormond Street in London, as she continued she told us that unfortunately as her heart was too bad that they could not offer her surgery and that we must let her pass away naturally. We could not understand how this could be true even when I had many scans during my pregnancy, and also being a high risk patient. How could anyone miss this? Especially when half of her left side of the heart was missing?
Once we tried to understand what was happening we had to explain to our son that his sister was not going to make it, and that she was to fly with the angels soon, we gave him an option to stay at home or come up and say his final goodbyes and to our amazement he chose to come and say goodbye to her as he wanted to be the best older brother possible, and so he along with other close friends and family members came to say hello and goodbye to our daughter. Isabella was truly loved within the small amount of time she had, Crumlin arranged her christening along with a private photographer that same evening. Myself and my partner spent her final hours that night alone with her, we did not let her see us cry, we acted as if nothing was wrong so she would remember our smiles only, until the moment the angels came for her while she laid peacefully on my chest, a moment all our hearts broke, a moment we will never forget as long as we live.
That very morning we were told we had to place her in her car seat to bring her home to Kerry, it broke my heart to see my partner walk out the hospital with our daughter in peace, people looking thinking we were the lucky ones to be bringing our child home, little did they know this was not the case. As we made that journey back down it came to me that I would never want any parent to have to go through such a horrific event. We feel that our Isabella was sent here for a reason, and that reason was to raise awareness, not only for ‘Congenital Heart Disease’ which is ever increasing, but also for the lack of resources maternity units actually have within hospitals.
My question is - how could such a diagnosis be missed? If Isabella could have been saved, she could have died on her way to Crumlin because this was not picked up and the correct resources were not put in place upon birth, it is 2016 by now this should not be an issue to raise, these are our children, are future and they are being neglected by the health service as women are not being properly screened during their pregnancies.
I know the one question which would be asked to me and that is ‘what would of made a difference if we would of known’, and the one simple answer is ‘preparation’, we would of prepared our son to what we would of been walking into, we would not of had baby bottles by the kettle as we walked into the house after her burial, yes the heartache would of still been there but every parent has the right to know what they are facing into for their own sanity. This has caused us emotional damage as parents to understand in one hand she was born healthy, to another that she would not make it.
Congenital heart disease is on the rise, this is not a heredity condition, this is simply caused by a miss communication during the very early stages of pregnancy, which brings me back to the fact every women should be entitled to a free detailed scan by a professional.
I have met with my consultant within the hospital who did confirm that yes the hospital should have picked her heart condition up, however she further explained that the maternity ward does not have the correct resources in doing so and that if such a condition exist that the women must give birth in Dublin.
Isabella’s case in up for review within the hospital to see if possible changes can be made in the future. This is a nationwide issue which must be identified by the health service immediately in order to ensure that our babies, who are our future, are being looked after.
We want to also address that we are not in the process of taking legal action, and do not plan to in the future, we want to work alongside the health service and be a voice for all parents who have experienced a similar heart breaking event.
Our darling daughter Isabella gave us the most precious gift of all and that gift was time and to that we are truly grateful, through this journey she has taught us so much and we know in our hearts her story can help make a change.
Please do not hesitate to contact me anytime to discuss this further, and I look forward to hearing from you.
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.
My reply to Micheal Healy -Rae
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.
Labels: angel, baby, bereavement, chd awareness, chdawareness, Crumlin, health, HSE, isabella, maternity, Micheal Healy-Rae, neonataldeath, pregnancy, scans, TD
I have two children one of which gained her wings and became an angel at 6 days old. My mission is to create awareness for congenital heart disease (CHD) and promoting better screening for all ladies who are pregnant. We want to help any other parent who's child has CHD or who is walking the same path as ourselves of loosing a child. Our angel Isabella was sent here for a reason and I believe her story will do just that.