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Dublin: 10 °C Tuesday 18 June, 2019
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Opinion: A fatal foetal diagnosis is nobody’s fault – the deliberate lack of support by the State is.

Do people campaign against families faced with the heartbreaking decision to turn off the life support machine of a loved one? Cases of fatal foetal abnormality are precisely the same.

Anonymous

THIS IS A follow up to an article I placed on TheJournal.ie following the devastating news that our baby girl had a fatal foetal abnormality which would result in her dying in utero. In Ireland, your current ‘choice’ (and I use this word loosely) upon the receipt of such news is to:

(a) Continue with the pregnancy until the baby dies, or,

(b) Obtain a TFMR – a Termination for Medical Reasons.

After the TFMR, and while waiting for our baby to arrive from the hospital for burial, I published the article and, yes, I did read all of the comments. Some comments were plain cruel, I will address this later; some were unwarranted and hypocritical, I will come back to this also; and some people seemed to be confused as to what a TFMR was and likened it to an abortion. To those who were compassionate and kind, a heartfelt thank you to you for your support.

Termination for Medical Reasons – some facts 

So, what is a TFMR and what happens?

First key point, a TFMR is not the abortion of an unwanted baby.

Our baby was very much wanted and very much planned, to the point that my husband flew back from a business trip abroad once I called him to tell him it was time… I know there are plenty of other couples who have had to do this. A few weeks later we were hugging and smiling when a pregnancy test confirmed that we were expecting. We scheduled an early scan as we had previously had a silent miscarriage and we were nervous. As the weeks went on and we heard our baby’s heart beating healthily and saw our baby grow, we started to relax and allow ourselves to believe that it was finally going to happen…we were going to have a baby.

We passed the 12 week mark and a full scan was planned at 13-and-a-half weeks. Blood was taken, our history of health was recorded and the last step was to see our gynecologist for a scan and make a plan for the rest of the pregnancy. I hopped onto the bed excitedly but somewhat apprehensively, as all couples going for scans can relate to. We never knew that we were about to face the worst experience of our lives.

She was going to die before her due date

Our baby had a 10mm hygroma behind her little head and a larger scan showed fluid in all of her organs; her heart, her kidneys and her little belly. We couldn’t believe it. Everything was going great a few weeks ago. We still didn’t understand the full extent of the problem, her heart was beating after all, wasn’t it? However, her condition was so severe with hydrops fetalis, that the doctors were almost certain that a chromosomal defect was the cause. Chorionic villus sampling (CVS) was performed with our consent and samples were sent for chromosomal analysis to Glasgow and Crumlin Hospital. The results confirmed all of our fears. We would never be taking our baby home. She was going to die before her due date. Her heart was beating, she was a little fighter, but she was fighting a losing battle.

The Rotunda were very sympathetic and hugely supportive and informed us of our options. In relation to option (a) waiting for nature to take its course, I was told that this would happen around the late 20, maybe early 30 weeks of pregnancy. I was at 14 weeks by the time the diagnosis was confirmed. After a week of tears and deliberations, my husband and I chose option (b). The only problem was that, although this is explained to you as an option or a ‘choice’, the procedure is not permitted to be performed in Ireland. It is illegal.

Ireland is outsourcing this medical procedure

To avail of a TFMR, you have to travel with what strength you have left to another country in Europe where this procedure is performed and provided for by the State, following an ethical review in the maternity section of a hospital. This is the second key point, a TFMR is a medical procedure, performed in the maternity section of hospitals in other European countries following an ethical review and approval by two gynaecologists.

However, even though Ireland is outsourcing this medical procedure, it does not compensate couples travelling from Ireland who have had to pay for this procedure elsewhere in Europe. You have to arrange the costs for the operation, flights and accommodation yourself. It’s €2,000 for the procedure alone. For people who can’t afford this, they have to take out a loan or they may be forced to continue with the pregnancy.

Unfortunately for us and other couples who also received this devastating news the same week, Liverpool hospital, which was the option of choice as they have helped many couples from Ireland, were unable to perform the procedure. They were busy for the next few weeks. We went into a state of shock and panic. What were we going to do? It wasn’t fair, it didn’t make sense that this procedure couldn’t be done in our own country.

One thing was clear… it’s just not clear! Is Ireland saying that you can’t terminate for medical reasons or is Ireland saying, ‘well you can terminate for medical reasons, we’re just not going to do it for you but we’ll allow our medical staff to tell you where you can get it done’? Should I feel grateful that I have the permission to travel and that I don’t have to fear arrest? Is this Ireland’s answer to avoiding political pressure from the rest of Europe? ‘The women get to travel and we don’t even have to pay for the procedure, ha ha, problem solved! We save face and money!’ Someone must have received a bonus for that decision. Well, why should hospitals in the UK or any other country have to staff up to support Irish women because the Irish government won’t? Is this Irish pride or Irish shame?

We travelled to Austria

We sought help with a hospital in Vienna. The diagnosis was sent from the Rotunda and was reviewed by two gynaecologists before we arrived in Vienna. We spoke with the gynaecologist on the phone before leaving Ireland and the severity of the condition was acknowledged. In principal the procedure was agreed to be performed following a scan in Vienna; the scan was performed by the gynaecologist in the maternity section of the hospital.

I was scanned by the same gynaecologist that scanned other girls in the waiting room with us. The only difference was they were all couples who expected to be taking their babies home on their due date and we were there to confirm that we weren’t. The gynaecologist was very kind and he spoke to me in English while he scanned our baby and confirmed everything the Rotunda had told us; our baby was going to die inside me.

The process was agreed and I was given two tablets to start the process. We thanked the doctor and left. I wept outside at the knowledge that the process was starting and there was no going back, but my husband and I were steadfast that this was the right thing to do. It had been two weeks since our scan in the Rotunda; we had had plenty of time to change our minds.

We received compassion in another country

We came back to the hospital at 8am the following morning. We met the midwife who was wonderful. She told me that it was a terrible situation to be in, not to mention that we had to travel and that I should cry when I needed to, they were there to support me. ‘But Ireland is in the EU!?’… this was a frustrated phrase we heard a lot from medical staff over these few days. I was given two tablets and I was to receive two more at 11am and 2pm. At 2pm the contractions really began to kick off and we were made comfortable in a delivery room.

My husband was given instructions to count while I was to breathe deeply. The pain was like nothing I was prepared for and for two hours my husband counted, gave me sips of water and talked to me. I was in such pain that I couldn’t respond to his attempts to make me feel better nor his suggestions of things to do afterwards, ‘Shall we go shopping when all of this is over?’. I felt so bad for him feeling helpless but I couldn’t get any words out. His second suggestion that we go climb up a mountain nearly cost him his life and he got a response to that he’ll never forget, but we laugh about it now.

Suddenly I felt a stillness come over me, like a quiet after a storm. I felt a need to pee and my husband went to call the midwife. She asked if I would take a bed pan, some women wouldn’t apparently, ‘something to do with dignity’ she said and smiled while she shrugged her shoulders. I smiled at the idea that at this point you would be choosy, that after what we had been through you would have any dignity left. My husband helped me while the midwife stood outside.

The most perfect and saddest moment of my life

I then felt the strangest sensation and I put my hand down, I could feel our baby arriving, and then she was there, lying in my hand. It was just me and my husband together and his arms around me when our little daughter arrived into the world. There was such a quietness in the room, it was the most perfect and saddest moment of my life but I felt such peace looking at her. My husband and I smiled at each other with tears knowing it was just the three of us, alone in the world for a little while.

She looked so perfect, apart from her swollen belly and a large flap of skin behind her neck from the hygroma. I was overwhelmed by how beautiful she was, she had such long fingers and toes, she looked so elegant. I’ll remember her loveliness for the rest of my life. I couldn’t believe that inside she was essentially broken and had no chance of survival. It seemed so cruel of nature to allow this to happen, to allow a baby to develop for months only to die in utero or shortly after birth. We named her Butterfly.

The midwife came in and helped us. She took our baby away to clean her and measure her and brought her back to us to hold her for a while longer. We were to call her when we were ready to give her back to them. She gave us a remembrance card with our baby’s footprint and handprints which is really comforting to have to look at now.

I explained that the Irish government was blame

I was brought to theatre later that evening for a curettage. My husband was there smiling at me when I opened my eyes after theatre. His parents were waiting in the corridor as my bed was wheeled back to my room. The following day I was discharged after being seen by the doctor and the nurse and given the necessary medication and advice for the follow-up.

They told me to come back to them for my next pregnancy and they would look after me. I assured them how wonderful the staff in the Rotunda were and explained to them that their hands are tied, that it is the people in government who are to blame. I showed them the beautiful knitted blanket and garments that Friends of the Rotunda had provided. I told them that the Rotunda were there to support us when we returned to Ireland. We left the hospital but I cried at the thought that my baby was still there and we had to wait for her to be received by the funeral home in my husband’s home town.

Third key point: a TFMR baby is delivered in the maternity section of a hospital and the parents get to hold their baby.

The funeral

My parents flew over two days later and both sets of parents were there to help us get through the grief. We made the funeral arrangements but we declined the coffins available as they were too sterile looking and I wanted something pretty. We had imagined bringing our baby home to sleep in a wicker basket and we cried with disbelief as we set about the process of making a wicker coffin for her. We secured butterflies and flowers to it, we wanted her to have her own little nursery garden, pretty enough for a butterfly.

The morning of the funeral the sun was shining and the birds were singing. I burst into tears at the thought that our baby would never hear that wonderful sound. Still, I felt strangely happy; the sunshine and the birds made me think of hope. I hoped for a healthy future for myself and my husband. I hoped that our baby was with God, where angel babies belong. We had downloaded the song from Karen Taylor ‘Precious Child’ for the funeral and I started to sing it in my mind for comfort.

We buried our daughter with her great-grandparents, in a lovely quiet cemetery in the grounds of the local church in my husband’s hometown in Austria. The scenery is wonderful there. We were surrounded by snow capped mountains as the ski season came to an end and spring was in bloom. ‘Precious Child’ played as the blessing was given and myself and my husband both lifted her little nursery garden into the ground where she would forever lie. A holy water font was by the grave and we blessed our baby and then both of our parents did the same.

Our mothers gave offerings, flowers with a beautiful purple butterfly and a beautiful statue of a baby enclosed in angels wings. We cried by the grave, our hearts torn that her grave would be in Austria while we lived in Ireland. Before we left Austria a few days later, my mother-in-law hugged us and promised to go to the grave often to tell her that her parents love her and that we are always thinking of her.

TFMR

This pain is somebody’s fault

Above is a picture I asked my father-in-law to take as I thought of the people who didn’t understand or likened our experience to an abortion, so that we could at least educate those that don’t fully understand the fourth key point; that as an Irish citizen, if you are lucky – and I say that with all the irony in the world – you get to bury your baby delivered by TFMR.

It’s hard to imagine we are lucky when we have to travel to Austria to visit our daughter’s grave but we know others have had to wait for ashes in the post or smuggle their baby home on the ferry in the boot of the car. Some, due to finances, cannot afford any of these options. There are so many stories sadder than ours.

This is the hardest part of the whole process. Not the fatal diagnosis, that is nobody’s fault. But the trauma added to that situation by the State’s deliberate lack of support? That is somebody’s fault and they should be ashamed for it.

Cruel comments

There are people who accused TheJournal.ie of fabricating this story and in turn insulted me, my husband, my daughter and my family. That was cruel of you. This story is very real for us and your words cannot hurt us any more than we have already been.

For any man who made cruel comments: you will never carry a child and you will never have to deliver a child that is sleeping only in Gods arm’s, who, with all the will and medical help in the world, will never wake up. You will never know what it is to know that you will not hear her cry when she enters the world. To know that you will never see her eyes open to see you for the first time. You will never know what it is to have all your hopes and dreams for your child fly away with her, as you hold her and pray that there really is a heaven and that angels have come to take her to be with all the other angel babies, because thinking anything else just hurts too much.

There are people who said that we had the choice to continue with the pregnancy. My father is a very religious man and he was very quietly upset when he first heard our bad news and he didn’t say much for a while until he understood all the facts. He then said to myself and my husband that it a noble thing for any parent to choose to end the suffering of their child.

What would you say to your daughter?

Mr Kenny, my question to you is: ‘what would you say to your daughter if she was in this situation? Where her option was to continue with the pregnancy until your grandchild died inside her or to end the pain earlier, which under your rules would mean she would have to leave her country? Would you look into her face and tell her that the child merely has a “hole in its heart” (a medically treatable condition), even though the qualified medical staff had told her otherwise?’

For those who do decide to continue with the pregnancy, I have the utmost respect for your decision and I would not impose my decision on you, so I can only ask that you respect the decision made by us and others. I have read your stories and they are as heartbreaking as ours. We were provided with both options and neither choice is the obvious one and we deliberated over both extensively. We are only in this situation because we decided to have a baby, and neither decision will give us that result.

To end the pregnancy or to continue, in the end the outcome is the same for all of us. We recognise your pain, it is the same as ours, we have just decided to face it sooner than you. We all make what we believe is the best choice for our baby – that should be our right. The difference is that you really had a choice that is supported by your country. We didn’t, but I would never campaign for you not to have your choice.

We would have given anything for a glimpse of hope

Can you imagine if for medical/compassionate reasons you were told you had to terminate the pregnancy when you didn’t want to? Can you imagine if the option that you wanted was not available to you in your country and you had to travel abroad for it? You might think this is a ludicrous scenario but the whole thing is ludicrous. It’s ludicrous that we are in this situation at all, that nature has been cruel to us and not made our babies healthy. What we are asking for is the right to have a choice.

I have read comments implying misdiagnosis. We would have given anything for a glimpse of hope for our baby. We were scanned in a private clinic. The problem was confirmed in the foetal section of the Rotunda, test results confirmed the result and finally the maternity hospital in Vienna confirmed her fate: fatal. We were very sure of the outcome before we made our decision.

Do people campaign against families who are faced with the heartbreaking decision to turn off the life support machine of a loved one? In these cases the woman is supporting the life of the baby, and the baby is not compatible with life outside the womb. We are asking for the right to turn off the support and to stop the suffering and to do this in our own country with continuation of medical care, our families around us, and a grave to visit.

Legislate for this – properly

The Irish government is turning its back on couples in these circumstances and outsourcing this activity to other hospitals in Europe. This fact should be printed every day, in every newspaper, until the government decides to listen to the people. A democratic government should lead on behalf of the voice of the many – not through a set of rules dictated from within the government based on the personal opinions of a few.

Every week more women travel quietly to hospitals in Europe, with what power is left in them, to ask for compassion for their broken baby and they travel home broken-hearted while their baby lies in a hospital in another country. What do we consider a good ending here? We got to bury our baby but she lies in a grave in Austria where we have to go to visit her. Is being ‘lucky’ receiving your baby’s ashes in the post? Is ‘lucky’ being able to sneak your baby home on the ferry in a coffin in the boot of your car?

We’ve done this so obediently, almost submissively, but there is a whole population of women and men in this country that are broken inside because of the way this government has treated them.

Please ask for this process to be legislated for (properly) in Ireland and STOP the outsourcing of TFMR. Please email/tweet/Facebook this article to your friends and make others aware that the Irish government is outsourcing this procedure to mainland Europe at a huge cost to impacted parents.

The author of this article wishes to remain anonymous.

Column: Ireland shows no love to babies dying in their mothers’ wombs

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