Ms Liz McDermott:

I thank the Chair, Senator Noone, and the members of the committee for inviting me here today. I am a member of a group called One Day More, a support group that came about because of the experiences of parents who received a poor prenatal diagnosis for their babies, that they would not survive either until or for very long after birth, or that their babies had significant developmental defects or anomalies that would impact them for life. When we received the poor prenatal diagnosis for our children, some of us were fortunate enough to speak to someone who had gone through a similar experience. We found this emotional and personal support to be of enormous help and in the end it is what prompted the setting up of One Day More.

The experiences of mothers like myself and families generally in maternity hospitals varies from very good indeed to very difficult and disappointing. One mother was told at her initial scan that her baby looked like a Michelin man and was asked why she was persisting with a futile pregnancy. This was followed up at each of her antenatal appointments, when she was asked to consider abortion and had to keep refusing until eventually she was advised to pick a plot to bury her daughter in. This kind of language is very insensitive, as the committee will appreciate. This little girl celebrated her third birthday last week. Another mother who refused to abort her baby who had Down's syndrome was contacted after each hospital appointment to change her mind and consider abortion. She did not change her mind and gave birth to her daughter last summer. That experience was a very negative one for her.

Couples have also contacted One Day More after they came home from England having had an abortion and told us that if they had known of One Day More, they might have considered continuing with the pregnancy had they known there were supports and perinatal hospice care such as the kind we are offering and trying to develop. All of this shows how necessary these supports and efforts are and I think it is safe to conclude that many couples would not choose abortion if perinatal hospice care was talked about more than abortion.

Some medical experts try to reassure people that abortion would only be available to women who want it, not to those who do not; they and their babies would be given every care and support throughout pregnancy and birth. However, we can see from the experiences of women who contact One Day More that they did not receive this kind of support. They were dealt with insensitively and felt like they were almost causing problems for the hospital in not going for abortion. Some of our members’ babies died before birth, and some very shortly after birth. Thankfully, some of those children are still alive and many are thriving against all predictions and expectations.

There is a very important point to make about this, which is that medical prognoses can be inaccurate, wrong, and occasionally very wrong or wide of the mark. Doctors cannot always accurately predict outcomes and parents of sick babies can be amazed at how much better things turn out for their baby than was initially thought. Hope is a vital human instinct and gives us strength and support at difficult times all through life. Challenging pregnancies are really no different. One Day More exists to offer support and hope to parents of very sick and disabled babies before, during and after birth.

As well as providing direct support to parents, One Day More raises funds for better provision of perinatal hospice care. We also provide care boxes for families awaiting the arrival of their baby with a focus on making the time they have together as precious as possible. When death is expected, the experience is bittersweet but it is incredibly uplifting to hear families describe the wonderful memories their time with their baby gave them and how much love they all felt towards each other and the baby. Even babies who do not live very long can bring with them tremendous gifts which cannot be predicted or quantified but only felt by going through the experience.

The committee may not be aware of my own personal experience. I became pregnant with my son, John, in early summer 2002. He was my second child. All was fine as far as I thought and I felt okay, though very tired, having a very active two year old daughter. I had a routine scan at 24 weeks - I could not attend the appointment at 20 weeks, which is the more typical time for this scan - in mid-December 2002 and on that occasion the nurse said she saw something amiss. She saw what she described as “shortened limbs” and could not see hands, although she said that might be positional. My husband and I had to come back the next day for an in-depth scan and the committee can imagine how we felt overnight. It was a very traumatic and difficult 24 hours

The next day, we went into the hospital and a consultant obstetrician carried out a very detailed scan which seemed to take forever, but was probably about 20 minutes. He wanted to check everything out very intensely and take measurements. I remember just looking away from the scanning machine the whole time, facing the wall. I did not want to look anywhere near this machine. I was numb and very anxious. Afterwards he said these words which I will never forget: “I’m afraid it’s a very serious abnormality. The baby’s limbs haven’t grown, there are two very short arm buds and I can’t even get a measurement on the legs.” He then showed us the pictures that he had saved and described in detail what he saw. I remember looking at the baby’s face on the scan and thinking he looked like my husband, especially round the eyes. The doctor told us it was a little boy. He finished by saying: “He’ll never do anything but lie on a bed. I am obliged to tell you that if you want to travel to England it won’t be a problem.” Obviously, he was referring to the time limits that applied at that time, that there would not be a difficulty, because of the abnormality. I remember instinctively replying that, no I would not go to England. I had just seen my baby’s face and even though I had no idea how I was going to cope, I felt very strongly that I had no right to interfere with this child’s life in any way. I just did not have that right. This certainty was instinctive protectiveness on my part more than anything else at that time, but it does not mean I was not extremely scared. I did not relish the prospect of how my life and my family's life would have to change.

I recall that during my pregnancy I felt jealous of women whose babies were not going to survive - their babies were destined to die in the womb or shortly afterwards - because at least their stories had a beginning, middle and end. My story was not going to end soon and the future looked extremely uncertain and scary.

I had a number of friends who were expecting babies at the time. All of them were healthy, they had no problems and their babies arrived safe and sound. I felt very sorry for myself in the midst of them and almost felt like I was living on another planet. My bump attracted comments like "Gosh, you're so neat" or "I'm sure you're all thrilled to be having another baby". I heard Claire Cullen-Delsol refer to this kind of experience during pregnancy. I can certainly identify with all of those harrowing experiences and the feelings of isolation that all mothers with difficult pregnancies go through. I agree with Claire and with others have called for much more antenatal care to be provided to women and their families when they have received a difficult diagnosis. The fathers are also affected. They do not know how to process their emotions or how to be. The situation may not be happening to them but they feel so responsible. As a country, looking forward, we need to invest in antenatal services, carry out research and provide for care.

I was very fortunate that I had support from family and friends, but I also pushed myself to stay connected to the world I lived in rather than go completely in on myself. That is a human survival instinct. When times are tough, one digs deep and one is frequently surprised by what one can cope with. It is only afterwards, looking back, that one asks "How did I cope with that?" One does cope.

I do not say this lightly, but we did not receive much in the way of support from the hospital, with one exception, namely, the "scan doctor", as we called him, who I had to attend separately from my own doctor. All the other medical staff appeared unconcerned about us and our baby. We just went through the motions and did what we had to do. We turned up to the hospital, kept all of our appointments and I was repeatedly scanned. I hunkered down and just wanted to get the birth out of the way.

I asked my consultant what would happen when John was born. He said that nothing would happen because there was no reason to think there would be a need for medical intervention and the birth would be treated like a normal birth. On the day that John was born, I went into hospital around 10 a.m. The doctor broke my waters and I went into labour. My husband and I were in a room and there was only a student midwife with us. A neonatologist who I think was a senior registrar, came in and spoke about our baby. He took a phone call while there and said "Oh yeah, weird case - no limbs". That is a typical example of the treatment we received. I was so focused on blocking everything out and getting on with having my baby that I said nothing. I restrained my husband from objecting because he was rather upset by that comment.

John was born just after 2 p.m. that day. My consultant told me about half an hour before John was born that he had to leave the hospital to see other patients in his consulting rooms if that was okay with me. At that point, I really did not care who was there because I felt very alone. I got the feeling that the consultant was choosing not to be present at the birth. It was not as if he was not leaving to deal with an urgent matter. He did not return to the hospital that day. I recall that he came to me the next day. I do not know if he ever went to see John. I will explain why I say that. I was separated from John after he was born and I do not recall seeing him for the rest of the time I was in hospital, which was about four days.

John was delivered by a doctor who I had never met before. Right after John was born, I recall seeing other doctors. I remember seeing a whole lot of people wearing white coats standing at the foot of my bed when John had literally only been born a few minutes before. One of them announced that the baby would be taken to the special care baby unit for tests. He was not sick and I recall that his APGAR score was 9. John was physically hale, hearty and healthy other than the physical abnormality. I was heartbroken that he could not be with me as I wanted to breast-feed him. I had let the hospital know that but they were just taking him away, I felt, in a way that just suited them rather than me. At such a time one is vulnerable and tired. These people were complete strangers and they looked serious and expressionless, so I did not challenge them.

John spent his first two days in the special care baby unit while I was in a room on another floor of the hospital. I do not quite know where I was; I was I was not in the typical maternity wing. I can only describe this as a horrendous time because no provision was made for me and John in terms of our comfort and privacy.

I remember that the weather was warm that April. The sun shone through the window of the special care unit and I had to sit on a plastic waiting room chair. Any woman who has had a baby will know that is not a very comfortable place to be for the first few days. I felt that I was in the way because there were lots of sick and premature babies around me. John was not sick or premature but he was in an incubator. I just felt that I was in the way. There was no nurse there for us. The feeding did not go at all well and I was very distressed by the whole event. I so wanted to give my son, John, an experience of closeness because he could not use his hands or feet to move or comfort himself at all. He just did not have them and I really wanted to bond with him. After two days, John was unceremoniously, and unannounced, brought down to me. Finally, we got some privacy and I was able to breast-feed him in peace and that went very well for ten months or so.

I remember that it was very awkward going into the communal changing room for nappy changing. I tried it a few times but silence fell as soon as I came in the door. All of the chat between the new mothers just stopped. So, I just did it in my room. I just could not deal with it really. Overall, I could not wait to get out of that hospital. I did not feel anybody was particularly nice to us except the one doctor who carried out the scans and who I went back to during my third pregnancy.

So, back to a vision for future prenatal and perinatal care. One Day More, Every Life Counts and organisations like Hugh’s House represent concrete examples of reaching out to women with very poor prenatal diagnoses and prognoses. These efforts are a drop in the ocean compared with what could be achieved in the way of supports if our Government would undertake research and investment in these areas. Women who have gone through this know what it is like and what would help other women. They are a tremendous resource to tap into if there is a will on the part of the Government to really look at giving women meaningful support.

It is very disappointing to see that all through this process, and that of the Citizens’ Assembly, and during the past five years or so, the only serious focus of political effort has been towards introducing abortion. Looking back, I can honestly say - hand on heart - that the experience of having my son in 2003 has had a hugely positive impact on me, my family and beyond. I could not have foreseen this at the time that I was carrying him but that is the nature of life. We cannot predict the future, how things will go, how we will feel or what help we might be able to get down the line. It is a mistake to plan these things out because we risk painting for ourselves a bleaker picture than what actually happens. That is a human tendency. We always look at the dark side or the worst-case scenario. Doctors feel duty bound to provide that in order to avoid unrealistic expectations. It is very important, therefore, to have these positive supports there for women.

I would see the introduction of abortion as something akin to deeming people like my son as unworthy of legal protection before birth - removing his right to life. I fail to see how that could become a new definition of progress. Repealing the eighth amendment would amount to that. My story is not an isolated one. Every day, new stories about women and families feeling pressure to have abortions emerge. Some people will find it hard to believe the stories I have mentioned. However, pressure from hospitals and medical staff to abort babies with special needs does happen. It is sadly what happens to people; it is their experience.

I must ask why the medical system seems to want to encourage women to opt for abortion. If we do not acknowledge this as a reality, it will keep happening and the pressure will grow more intense and direct, particularly if abortion is legalised and takes place in hospitals and clinics here. This type of pressure must logically account for the current position in England where 90% of babies diagnosed with Down's syndrome are aborted. The figures for Denmark and Iceland are even worse and would be 100%. Abortion can happen at any time up to birth at nine months. I have read that such abortions can even happen during birth, for instance, in cases where the disability or defect has not been picked up antenatally and the woman states she cannot cope.

The provision of abortion is increasingly being questioned in other countries as people see where legalisation leads. Alternatives to abortion and support for women with difficult or unplanned pregnancies are also offered in these countries. However, because they do not have anything like the eighth amendment in place and abortion is widely lawful, they face obstacles and difficulties carrying out their work. Organisations which do life sustaining work are stymied and prevented from reaching out to women in a supportive way to give them the opportunity - not a choice - to keep their baby.

We can see from other countries that abortion is a large and profitable global industry. Its practice, standards and methods are not always women centred, as is claimed, but may be more about profit. Just last month, the Care Quality Commission in Britain issued a damning report on the abortion provider, Marie Stopes. It revealed that staff were being paid bonuses to encourage women to go through with abortions. The inspectors found evidence of a policy in all 70 Marie Stopes clinics in the country directing staff to contact women who had decided not to go through with an abortion, offering them a new appointment. This is tantamount to placing pressure on women to opt for abortion and is rightly causing people to rethink their support for abortion and look at alternatives which genuinely care for women and babies. This is just one of several recent scandals involving the abortion industry in England and elsewhere.

It is extraordinary that we are discussing having a referendum to introduce abortion and no committee is examining what abortion has led to in other countries. I am not saying this to disparage or offend anyone but because I genuinely find this extraordinary. A few years ago, a conference attended by a well known abortionist, Dr. John Parsons, was held in Britain under the title, Don't Mention the 'A'-Word. Britain is a country where abortion is viewed as okay. The title of the conference betrays that nobody likes to talk about abortion and it was referred to as "the A-word" for this reason. Dr. Parsons stated the following at the conference:

When you are doing termination procedures, especially later terminations, you are exposed to a rather gross, destructive process dealing with bits and pieces of fetuses, which are not very nice... That is why we are not keen on people observing abortions. I was recently asked if I would have a journalist join me at work, who wanted to write for The Daily Telegraph.