Babies Born to Mothers with Substance Abuse Issues: Discussion

We will move on to the second part of the meeting. I welcome Dr. Adrienne Foran, consultant neonatologist from the Rotunda Hospital. Deputy Catherine Byrne has raised the issue of babies born to mothers with substance abuse issues. We said we would use this meeting as an opportunity to examine the matter. Dr. Foran, you are very welcome. Thank you for being here.

Dr. Adrienne Foran

I thank Deputy Catherine Byrne for bringing up this important issue. I am a consultant neonatologist in the Rotunda Hospital and in the Children's University Hospital, Temple Street. I am also a member of the national clinical advisory group for neonatology. Recently, I was appointed as clinical director of Temple Street hospital.

The Rotunda and Coombe hospitals are in a unique position. They tend to have the largest volume of these patients. The document before the committee goes through the matter in more detail but in the interests of time, I will try to summarise it.

Neonatal abstinence tends to pertain to those babies who are withdrawing from mothers who are substance abusers, generally of opiates, including heroin and methadone, as well as other hypnotics. What we have seen in the past five or ten years is that the majority of these mothers are polydrug users. One of the greatest challenges in delivering a maternity service arises where the mother is on a benzodiazepine, for example, Valium or sleeping tablets. She may not always declare it. The half-life of these drugs is far longer than for others, so the baby may not actually withdraw for two to three weeks and by then the baby is home. The way we manage that and how we identify it are major challenges.

There is a policy in the UK and in some centres in the United States to encourage these mothers to abstain during pregnancy. We have found, through research between the Coombe and the Rotunda undertaken by our chief pharmacist, Brian Cleary, that this is probably not a good model. What tends to happen is that if we ask the mother to abstain she actually disengages from the services, does not attend her antenatal clinic and gets into far more trouble during the pregnancy. A good deal of research suggests that keeping these women on a methadone programme is actually safer for mother and baby.

Approximately 100 per year come to our services in the Rotunda. I have given the committee our clinical specialist midwife report. Some 68 of these delivered in 2014. Up to 10% of our deliveries, approximately 1,000 babies per year of the 9,000 delivered in the Rotunda, are admitted to the neonatal unit. Of the 68 deliveries, 33 were admitted for a variety of reasons, not always for neonatal abstinence syndrome. It may have been because they were born more premature or because they had problems with blood sugar. Approximately one third, that is, ten or 11 of that figure - sometimes it could be 15 or 20 - would have had full-blown neonatal abstinence syndrome.

One difficulty is that it is not necessarily the dose of the drug or the number of drugs the mother is on. Some babies have a genetic predisposition to withdraw more acutely while others withdraw more chronically. There are major social issues dealing with these mothers. They often come from troubled backgrounds. They do not have very good parental models. They may have had other children who are already in care. There are complex social issues. Having a drug liaison midwife has made a major difference. I apologise for the typographical error in the document provided in that the word "lesion" should be "liaison".

The infrastructure to which Dr. Coulter-Smith and Dr. Sheehan referred is a problem for us. Ideally, once these babies are identified under the scoring system as requiring more intensive management, they should be nursed in a dark quiet room with dimmed light and swaddling.

That is not possible in the Rotunda Hospital in 2015 because we do not have the space. Ideally it should be done in a transitional care unit so that the mum can stay with the baby which stops the social problems escalating. If we take the babies away from the mums, they are in a busy, high-dependency unit with 20 other babies. Our nurses are a bit nervous about nursing them in a side room because of the implications for staff safety as well as baby safety. The infrastructure is not there to provide the model of care properly and, therefore, our length of stays are far too long. The committee will see that the average length of stay for these babies is between 11 and 54 days. Although the numbers are small, they block our beds from a practical point of view. Furthermore, we are not giving the babies the service they deserve because they are not being managed as appropriately as they should be.

The elephant in the room is the very controversial issue of foetal alcohol syndrome. We probably have a lot more problems with this syndrome than is openly acknowledged in this country. We have proposed a project to the Health Research Board, HRB, which would study this anonymously, as was done 15 or 20 years ago for HIV. Babies would not be identified and we want to look at the their first poo at delivery and check the alcohol levels. That would give us some data because we do not have data on the number of babies exposed to alcohol during pregnancy. This is an issue that I and Dr. Miletin from the Coombe hospital have spoken about previously. We might see one or two babies a year who clearly have full-blown foetal alcohol syndrome but the mother would be an identified alcoholic. There are probably many more babies affected and those effects are probably a lot more subtle. They may not present with problems until they are two or three or at school-going age when we see learning difficulties. Unless we know how widespread the problem is, we will not know how to deal with it.

Despite all of the infrastructure and staffing problems to which I have referred, one can see from the report by our drug liaison midwife, Justin Gleeson, that the number of admissions is going down and that how we manage those babies and the number of babies who get to go home with mum, albeit with a grandmother or other support provider in place, has improved dramatically since he was appointed in 2008. We have a dedicated team in place. Patients see the same midwifery specialist antenatally, during labour and afterwards. He is the key link for us with social services, with the obstetrics team headed by Maeve Eogan, one of my obstetric consultant colleagues, and with a really good pharmacy support service. We do it well but it could be done a lot better.

I thank Dr. Foran. I call Deputy Byrne.

I thank the Chairman and committee staff for organising this meeting. I have been concerned about this issue for some time and am delighted to have had the opportunity to hear expert views on it and to hear the witnesses speak about it with such passion. I live very close to the Coombe hospital which is in the area I represent and I meet mothers regularly who I know to have substance abuse issues, not only with drugs but also with alcohol and cigarettes. I am delighted that Dr. Foran mentioned alcohol because that was the basis of my request for this meeting. I know a number of people who foster children with high-dependency issues as a result of parental alcohol and drug abuse. I have spoken to these foster parents about caring for such children, many of whom do not present with problems until they are seven or eight years old. The foster parents have spoken to me about the difficulties they face in dealing with this and how it can lead to many problematic medical conditions in the children.

I have read the reports submitted by the witnesses which are wonderful. I will take them home with me and carry out more research into this area because it is an issue about which I am passionate. I never knew that when a baby goes into an intensive care unit he or she is given methadone. I never realised that was part of the process of treating the child. I support the drug liaison midwife system fully. I have met people who have gone through the system and have come out the other end. How many drug liaison midwives are there in the Dublin region?

Dr. Adrienne Foran

There are two that I am aware of, one in the Coombe hospital and one in the Rotunda Hospital. Holles Street hospital does not tend to have the same number of patients to justify such a post.

Dr. Adrienne Foran

Like all areas of staffing, there probably could be more but if one looks at opiate, methadone and heroin abuse, the cohort of women involved is small - about 100 per year - and one whole-time equivalent for that small group is probably about right. However, if we had a community-based drug liaison midwife and Justin Gleeson had the support of another colleague, we could probably identify the more subtle exposures, particularly to alcohol, earlier and get those patients into the system. What we are presenting here and what we know about is probably only the tip of the iceberg. What Deputy Byrne is seeing in the community probably reflects better what is really going on. The Deputy is absolutely right that these are not easy babies to bring home. They withdraw for months if not years, they do not sleep very well and get terrible nappy rash. They are not easy babies to care for. We rely very heavily on the foster care system. The committee will see from our report that regarding the 14 babies mentioned, there were 19 interim care orders. We had one horrific case where a mum was booked in for a C-section for medical reasons. When she realised that a C-section would mean that would not have access to drugs for five days, she went off the rails. When she presented, the baby was in severe trouble because she did not stick to the programme because she was worried about being kept in hospital for five days. If we had continuity of care through another colleague for Justin Gleeson who could cover weekends and out-of-hours, we could stop those few who escape. Such patients are very fragile and they feel very guilty. We cannot be judgmental because addiction is a complex issue. The judgmental attitude has gone and that has helped a lot but if we ask these women to abstain throughout their pregnancy, it falls apart.

Can I continue, Chairman?

I wish to refer to the breakdown of monthly clinics and client numbers for 2014 in the report. In terms of both antenatal and postnatal clinics, why do the numbers attending the postnatal clinics drop so much? Is it just that the mothers do not come back?

Dr. Adrienne Foran

There are a couple of issues. Of the 106 women whom Justin met last year, only 68 delivered. Some miscarried and there was a higher rate of premature and stillbirths among those women. There were many complex issues during their pregnancies for these women. That is one of the reasons for the fall-off in numbers. I also know from my own follow-up clinics in the Rotunda that they would be among the highest non-attenders. The HSE can have a one-strike-and-you-are-out policy if an adult does not turn up for an appointment but we feel a big responsibility not just to these babies but to all babies. It is not the babies' fault that their mothers did not bring them back so we give them two or three appointments, we contact social workers and public health nurses and try to track them down.

So there is a tracking system.

Dr. Adrienne Foran

Sadly, maybe once every six or seven years, some of these babies are found dead at home because the support services have not continued into the home.

That answers that question. Reference was made earlier to the fact that a lot of these mothers are now finding themselves homeless and I deal with this every day. I could bring the witnesses to my office and show them the mountain of files I have on homeless people, as is the case with Deputies from throughout the country. The biggest issue with homeless women who are pregnant is the difficulty in tracking them down. They move around so much that it becomes difficult to keep in contact with them, especially if they change their mobile phone number.

Regarding babies who are born with addiction issues, as I said already I did not realise that they were continued on a methadone programme, which information is very helpful. I have never witnessed such a baby having a seizure but I know someone who has and I know that it was a truly frightening experience.

I thank the witnesses for their very comprehensive report. This is an issue I have been concerned about for some time because in the area I represent, there are large numbers of young mothers who have substance and alcohol abuse issues. It is for that reason I wanted to try to get a better handle on the medical end of things and to determine how I can, in my work as a public representative, help to direct people to the appropriate services. I agree with the witnesses that when mothers leave hospital with their newborn babies we must continue to track not only those with problems but also the healthy babies. I know it is difficult for service providers to trace and track those who are addicted to alcohol or drugs in their journey with their babies.

I have to pay a huge compliment to the staff I do know who deal locally with people with substance abuse issues. I also want to pay a compliment to the many foster parents who take on these babies with their not-normal medical issues. They do a wonderful job and sometimes I do not think we give them the support they need. The Government needs to look at that in more depth and at how these foster parents can be helped in order to maintain some kind of normality in their own lives. Their lifestyle pattern totally changes when they take in a baby with substance abuse issues. They are prepared for it but I believe we need to support them a little more.

I thank Dr. Adrienne Foran for her presentation on this important service, which is delivered with compassion and passion. Are there any services similar to this available outside Dublin?

Dr. Adrienne Foran

It is very patchy. Justin Gleeson, our drug liaison midwife, along with pharmacy departments, the Rotunda and the Coombe, wrote the national document on prescribing to ensure there would at least be consistency on how these women are looked after. He has told me off the record that he gets many phone calls from around the country from people seeking advice and help. These services tend to be centred in the cities. Limerick and Cork have issues. I am sure, however, like all of these issues, it is probably wider. The national guideline was developed in 2013 in order to try to have consistency because the literature on how these women should be managed is conflicting and that can cause many problems.

I am not sure if we can get the data. Dr. Sharon Sheehan said at the start that data is key. Ireland is a small enough country, so we could do concentrated epidemiological research. Getting the data would help us stratify and ensure people are not left out of the system.

Why is it difficult to get the data?

Dr. Adrienne Foran

It is relatively easier to get data for the opiate abuse mothers. Accordingly, it is relatively easy to identify a mother who is a heroin user or on a methadone programme because they have to be linked in. As Deputy Catherine Byrne said, however, the problem is they are mobile, fragile and difficult to track down. One hundred and six mothers book with us but only 68 deliver with us. We do not know if all of them run into problems. The other issue is there are other abuse problems on which we do not have good data. It is probably a social and cultural issue that in Ireland we are a bit uncomfortable in tackling the issues around alcohol abuse. We will tackle methadone or cigarette use but alcohol is a difficult one for us to tackle.

Yet it was stated that issues around alcohol are increasing.

Dr. Adrienne Foran

I do not know if they are increasing but we think they are. While it was not socially acceptable for my grandmother to sit in a pub 40 years ago, it is the norm now for young women as young as 13 and 14 to drink quite heavily. That is why we are keen to get that data in order to find out how many babies are exposed to alcohol during pregnancy. If that were anonymised, people would consent to give that information. Then we would get some idea if it is as a big a problem as we think it might be or otherwise.

Is there still the same resistance from the medical profession to inform expectant mothers to abstain from alcohol during pregnancy?

Dr. Adrienne Foran

No. People are very clear that even one drink is probably one drink too many. However, it is socially acceptable to have one or two and nobody knows if that is safe. All women know what is right to do when they are pregnant. If one asks a woman who smokes how many cigarettes she smokes a day, she will say five to ten. We tell medical students she means 20. It is the same when one asks how many drinks people take a week. When people fill in their health insurance forms, nobody writes down exactly what they do. It is human nature that we do not want to be exposed. Pregnant women will be protective of their babies. The only way we will know what the true instance is by getting the data.

Dr. Sam Coulter-Smith

The discussion we have had is very interesting. The fact we are able to discuss this issue and the services put in place in the Rotunda and the Coombe for this vulnerable group of patients is important. The reason we could do this, as well as expanding our foetal medicine units and the many subspecialist services, is because we are voluntary hospitals. We have the ability to make decisions around the type of service we provide, as long as it is within budget. In recent years we have expanded areas, done things a little bit better, worked on some specialism, employed specialist midwives in particular areas and sent people off to train. These are the actions we can take as a voluntary hospital that a Health Service Executive hospital will find more difficult. Voluntary hospitals have the ability to expand services and deal with issues as they arise in a timely manner, whereas hospitals under other governance systems find it a little more difficult to do. That has been one of the success stories of volunteerism and an important message to be delivered today.

Are there any conclusive data between the three Dublin hospitals on the number of women using these services?

Dr. Adrienne Foran

Between the three hospitals, we reckon that approximately 200 women a year book and in the region of 120 deliver.

Dr. Jan Miletin

It would be similar in the Coombe. Holles Street is completely different.

Dr. Adrienne Foran

Holles Street has a completely different catchment area and population. I trained there for four years and there would only be a couple of women in such circumstances presenting each year.

Dr. Jan Miletin

Its numbers are very low for drug abuse. It would be probably up to ten a year compared to 60 in the Rotunda and 60 in the Coombe.

Is there any breakdown between drug and alcohol misuse?

Dr. Adrienne Foran

We have no idea of the alcohol numbers. That is why we are keen to do this national study and get every baby’s poo to find out.

Should this include Health Service Executive hospitals?

Dr. Adrienne Foran

Yes.

Dr. Jan Miletin

It is much more difficult to deal with alcohol abuse. Mothers involved in opiate abuse are encouraged to be in methadone programmes and, therefore, engage with the services. Alcohol is different because there is no programme for somebody drinking alcohol.

Another problem is that the baby, after delivery, might look completely normal, meaning there are no immediate signs that the baby is affected by alcohol. Later, however, there might be problems at school age with learning difficulties. A child could have a foetal alcohol spectrum disorder rather than a syndrome. To have a baby with a syndrome, the mother would have had to have drunk a lot. This might affect one baby a year. However, there might be many more babies whose problems might express themselves later in life. That is why the study to check babies after delivery, checking their poo for alcohol metabolisers is important.

There was an interesting story this morning on thejournal.ie about a person who, for various reasons, went through withdrawal when he was born and who is now running his own business.

Dr. Adrienne Foran

When they are managed well, the programmes can work really well.

The data are needed, however.

Dr. Adrienne Foran

We need the data to target the right people.

Are there any statistics around alcohol use and fertility rates?

Dr. Sam Coulter-Smith

I am not aware of any figures in that regard. We have very little information on alcohol in pregnancy.

Do any of the witnesses have any comments on the proposed location of the national children’s hospital?

Dr. Coulter-Smith welcomed the protection of life in pregnancy legislation but said it does not assist him when he is faced with a woman carrying a baby with either a fatal foetal abnormality or a life-limiting one.

Has he any ideas about what should or could happen? He is an eminent professional in the field.

Dr. Sam Coulter-Smith

I am an obstetrician - a simple obstetrician. I am not a legislator and I am not a lawyer so I am not an expert in how things should be drafted. What I can safely say is that the vast majority of obstetricians would like to see a situation where we are able to look after and support women in the choices they have made regardless of what those choices are. If a woman decides that she wants to carry on with her pregnancy and maintain it, we need to be able to support that choice where, because she has unique needs, we can look after her in facilities that are possibly slightly separate from ordinary antenatal clinics which cater for the run of the mill normal obstetric patient. Resources need to be made available for that type of situation. Hospice-type care for those babies would be very welcome but we need facilities to do that. Our current infrastructure does not and could not support that type of facility. That is a very humane way of dealing with things. In the same way, for women who choose not to proceed with the pregnancy, ideally, we would like to be in a situation to support them in that choice.

We have spoken about low-risk and high-risk women becoming pregnant. There are situations where it is unsafe for a woman to travel abroad for a termination of pregnancy and, in that situation, we would favour legislation that would support us to be able to look after a woman who has made that choice. It is about our support for women in the choices they make. It is down to lawyers and legislators to try to put things in place to allow us to do that.

Does Dr. Coulter-Smith have any thoughts on the national children's hospital?

Dr. Sam Coulter-Smith

I think an enormous amount of money, time, including professional time, and effort has gone into various different plans for the national children's hospital over the years. If it does not get planning permission for the current St James's site, it would be a tragedy. I would dearly love the national children's hospital to be on a site co-located with the Rotunda but we need to look after the Rotunda's needs first.

Dr. Adrienne Foran

It is an embarrassment to me as a paediatrician. I put many documents through in 2007 about how neonatal intensive care should be run in the new children's hospital on the Mater site, €30 million or probably €60 million was wasted and now we are being asked to do it again. I am working on the strategy for the new children's hospital and, as clinicians, we just want the thing built. We do not care where it is built. The children's hospital in Belfast will be built before our hospital is built. It is just an embarrassment to walk around Temple Street doing a ward round, as I am doing this week, and see the infrastructure that is there. It will be an embarrassment as a country if we cannot build a decent children's hospital.

Dr. Sharon Sheehan

If I could go back briefly to the question concerning alcohol and our lack of data, we in the Coombe ask all our pregnant mothers about alcohol use when they are booking in. Last year, we had reported a current alcohol use rate of 1.4% for all our patients. The issue is whether we believe that only 1.4% of our pregnant women are using alcohol. I do not think we do. That is the real importance of this study. We know what reported use is, but what is actual use? That is where the discrepancy lies. It is not that we are not asking. We are asking but it is the validity of the information we are getting that is the issue.

In respect of the children's hospital and our proposed new tri-location with the children's hospital and St. James's Hospital, we are delighted the children's hospital will be around the corner from where we are. We really welcome the opportunity to be the maternity hospital of choice that will be tri-located with the new children's hospital and the adult facility in St. James's Hospital. We have not been given timelines in respect of our move and it is really important we continue to build all the links with the new children's hospital and St. James's Hospital. Many of our clinicians are shared appointments across the sites and it is very important we continue to facilitate streamlined access - building those links prior to any physical location. It is very important we continue to invest in our facilities on our current campus because it may be ten years or more before we move and our current services and systems are unable to continue to deliver a service that would see us past that stage. Investment on our current site and in our services and facilities is paramount long before any proposed relocation. Many very exciting things are happening around the new children's hospital, including linkages with the adult hospital and the Coombe as the chosen maternity hospital, so it is very exciting. I agree we need to build it.

The nature of the Houses is such that I had other commitments this morning but I did have a look through the report last night. To be honest, it was very useful information. It is also sad to realise that it is so patchy throughout the country, we lack so much data and we obviously need a national study. We have no data on alcohol and we know what our relationship with alcohol is like in this country. In respect of babies being born with the syndrome and the fact it might be only one per year, due to the fact we have no data and babies do not present with symptoms immediately, I presume, rightly or wrongly, that many children are misdiagnosed later because there are no data to tie into the syndrome. That is very sad as well.

My next question concerns cocaine use. Cocaine is a recreational drug that is used across all classes of society. Is it difficult to collect data on that?

Dr. Adrienne Foran

The problem with cocaine is its very short-acting half-life. If we get a urine sample from a mother who delivers today or from a baby who is born today in the Rotunda who we think is withdrawing, we pick up methadone and heroin from a few days or a week earlier. The cocaine will be long gone even if she has taken it that morning so the only way we can actually accurately detect cocaine is, again, in a stool sample or hair follicle, which will have a three-month lifespan. This is technically easy to do but, again, needs funding. I would have said when I came back in 2007 when everything was still up and running with the Celtic tiger that we would have seen a lot more and it was definitely linked with certain anomalies such as gastroschisis, which is a bowel problem that a baby can be born with. We feel, as does Justin, who is the liaison midwife, that it has probably reduced. It may be resurfacing but in the more middle-class to wealthy areas where it is a more expensive recreational drug. It is difficult to detect it in the baby in the same way we detect other things but it can be done. It just needs resourcing. A baby will not withdraw from it in the same manner as a baby withdrawing from an opiate so it is more difficult to identify in the baby.

I thank the witnesses for their comments on the national children's hospital. I agree with them that it needs to be built now and I understand that if it does not go ahead this time, we will never get the hospital we need for very sick children. I have been following the television programme on Our Lady's Children's Hospital in Crumlin. I spent some time there with my grandson a few weeks ago. My grandson was not sick but he was in there for a reason. In respect of being in a room where one could even put in a cot and possibly a chair, one looked at very sick children being confined to very small rooms. The staff were doing their best, but in the long run, we need a new hospital. The one thing that has really encouraged me about the planning application is the input of young people who were sick, who have gone from being very young to being young adults and how they coped within the confines of the hospital and other hospitals. They have made a huge impact. When I chaired the meetings, I came away believing these young people had put the nail in for the hospital going ahead. I hope it goes ahead sooner rather than later. I thank the witnesses for their comments on the Coombe.

I thank the witnesses for their candour and the quality of their presentations. I thank them for the work they are doing. They have our continued support and we will reflect upon what they have said. Dr. Rhona O'Mahony will appear before us at a later date. She was available but she did not appear before us this morning because of the issue that Deputy Catherine Byrne wanted to raise and which we wanted to get in this morning.

The joint committee adjourned at 12.30 p.m. until 9.30 a.m. on Thursday, 1 October 2015.