Catherine Martin (Dublin Rathdown, Green Party) | Oireachtas source

I move:

"That Dáil Éireann:

notes that:— a premature baby is a baby who is delivered at less than 37 weeks gestation;

— 1 in 16 women in Ireland will deliver a premature baby;

— according to figures from the Economic and Social Research Institute and the Central Statistics Office, over 4,500 babies are born prematurely in Ireland every year, which in 2014 was 6.6% of all births;

— under the Maternity Acts 1994 and 2004 a mother is entitled to 26 weeks maternity leave and maternity benefit and an additional 16 weeks unpaid maternity leave;

— maternity leave generally comes into effect on the birth of the child and does not take into account whether the child is full-term or premature;

— babies surviving from the earliest gestations, such as 23 weeks, can spend months in a neonatal unit in hospital, including in intensive care units, and that most babies who are discharged from a unit on supportive medical equipment require full-time care in the home and will need to attend regular clinics and therapy appointments;

— allowances are available in the Acts for a mother to defer her maternity leave while a baby is hospitalised, but these allowances do not adequately provide for the needs of premature babies, and this inadequacy is particularly apparent in instances where mothers are ill, or have undergone a caesarean section, or when premature babies have been transferred from rural hospitals to Dublin neonatal units; and

— premature babies are more at risk of disease and infection than full-term babies, including a higher risk of respiratory problems such as respiratory distress syndrome, neonatal infections, heart problems, intraventricular haemorrhage in the brain, retinopathy of prematurity, hyperbilirubinemia, hypothermia and necrotising enterocolitis;acknowledges:— that the current length of maternity and paternity leave does not recognise the difficulty for parents of premature babies, whose leave begins long before they can take their baby home from hospital;

— that parents must spend significant time and resources on caring for their premature babies;

— that in some cases, parents of premature babies from rural areas are compelled to travel for up to four hours on a daily commute to neonatal intensive care units, thus incurring significant expenses in medical care, accommodation, transport, parking and basic meals; and

— the emotional and financial burden placed on parents caring for premature babies and the need for specialised support, particularly for parents who have other children;calls on the Government to extend the period of statutory maternity leave and maternity benefit for mothers of premature babies, by the length of time between the delivery date of the baby and either the date the baby would have been delivered if full-term or the date of the baby leaving hospital, whichever is later, and that this extension be in addition to the current entitlement to 26 weeks maternity leave and maternity benefit and the additional 16 weeks unpaid maternity leave under the Maternity Acts 1994 and 2004; and

further calls on the Government to:— extend paternity leave to incorporate the circumstances of premature babies;

— provide additional financial support, where necessary, for the families of premature babies, in relation to travel and accommodation costs, so the family unit can stay together;

— ensure that forms and information on maternity leave and related benefits are available in all neonatal units;

— publish advice for all employers about how to best support parents of premature babies; and

— require employers to have a policy in place for supporting parents of premature babies."

Tá mé fíorshásta an rún seo de chuid an Chomhaontais Ghlais a chur faoi bhráid na Dála anocht.  This motion calls on the Government to recognise the crucial needs of a mother when her child is born prematurely. The Green Party has proposed this motion because it believes the extension of maternity leave and maternity benefit for the mothers of babies who are born prematurely is a vital first step in tackling the particular challenges faced by the parents and families of prematurely delivered babies, as well as the babies themselves.

I acknowledge the many parents who have written to me in recent weeks in support of this motion. I welcome the mothers, fathers and children who are in the Gallery for this afternoon's debate.  I thank them for their attendance. It is possible that any positive changes we make to maternity leave will be too late for some of them. They are not here for themselves, but for future mothers and fathers and future generations. I admire their strength, courage and generosity of spirit. Many of them know at first hand what is at stake today. They passionately want to see a more caring Ireland for mothers who are unexpectedly catapulted into a different world where they must face a challenge of a magnitude they have never have faced before.  A mother who wrote to me yesterday suggested that if people lived through these circumstances, they would not think twice about making this change. I welcome members of the Irish Premature Babies organisation to the Gallery. I thank them for supporting this motion. I acknowledge the selfless and dedicated work that is done tirelessly by this group and all charities to support and advocate for the families of premature infants and the premature infants themselves.

One in every 16 women in Ireland will give birth to a premature baby. More than 4,500 babies are delivered before 37 weeks in this country each year. Some babies are born 17 weeks before their due date. The impact of premature birth on parents and members of the extended family can be significantly challenging and sometimes daunting. Ireland is a small country. Everyone knows parents who have been affected by the worry, shock, terror and uncertainty of the premature delivery of a baby, followed by long hospital vigils hour after hour, day after day, week after week and, in some cases, month after month. In such circumstances, parents rapidly become acutely aware of the scale of the varied worries and challenges they must face. They learn about infections, diseases and many other health challenges which premature babies are at much greater risk of contracting than full-term babies.

While new parenthood is always a challenge, the mother of a premature baby has to deal with many additional challenges, the first of which is the sudden and unexpected timing of the birth itself. Many mothers do not have time to pack a bag for their stay in hospital, let alone be afforded the time to inform their employers in advance about events. When their stay in hospital ends and they are formally discharged, it is only the end of the beginning. In many respects, they are not discharged at all. Their thoughts are 100% focused like tunnel vision on the ongoing care and well-being of their babies. Due to the extent of their committed caring time, which is purely spent in the hospital environs, other people in the hospital who are unconnected to their plight sometimes mistakenly take them for being permanent members of the hospital’s caring professions. In one sense, they are - sometimes, unfortunately, to such an extent that they can selflessly neglect their own wellness and well-being. What does this State do at present? It fails to treat them differently from the other mothers who are fortunate enough to give birth to full-term babies.

Today, the Dáil has an opportunity to say that there should be no more of this, to give these mothers a voice and to hear that voice. In acknowledging that voice and recognising the current inequality, the Dáil can resolve to address this issue in a meaningful way. The mothers of Ireland are watching us attentively today. I do not doubt that some of them are filled with nerves. I ask the Members of this House, who often have differences and disagreements in this Chamber, to stand together not for themselves or their respective parties, or even for new politics, but for mothers who find themselves propelled into a frenetic world in which the immediate and most pervading concern that permeates every second of their day is the fear that their babies might not survive. This fear can become speechless and suffocating for parents as they zealously watch their tiny and fragile children fighting for their lives in hospital. We know that emotionally draining and physically exhausting days, weeks and months lie ahead for such parents. As legislators, we cannot remove fear and worry from the parents of premature babies, but by extending maternity leave and benefit we can remove some of the incredible stress and strain from their already troubled lives. We can offer and deliver real help and make real change.

An opportunity like the one we have today should not pass without acknowledging and paying tribute to the hard-working women and men who work in hospitals and health care facilities across the country. They work tirelessly, often in incredibly pressured work environments, to ensure the best professional expert care is given any baby who is born pre-term. Like the mothers I have mentioned, courageous doctors and nurses are unheralded champions.

Under the Maternity Protection Acts 1994 and 2004, mothers are entitled to 26 weeks of maternity leave and benefit and 16 weeks of unpaid leave. This generally comes into action on the birth of the baby. Babies who survive from the earliest gestations, such as 23 weeks, can spend months in hospital neonatal units because, as a result of being born prematurely, their major organs have not had enough time to develop in utero. Premature babies are at more risk of disease and infection than full-term infants. Babies who are discharged from neonatal units with definite long-term diagnoses or on supportive medical equipment need full-time care in the home.  Under current legislation, a mother will use up the majority of her maternity leave and benefit before her baby comes home from hospital. While it is possible for a mother to defer her maternity leave while her baby is in hospital, it is out of the question for many parents to go back to work while their baby is encased in a glass box and hooked up to tubes, especially when there is a great deal of evidence that babies benefit greatly from the touch and closeness of a parent on a daily basis.

All of my three children were born at full term. In recent years, I have watched and listened to the heart-wrenching stories of friends and colleagues at work who have had premature babies.

I cannot begin to imagine and comprehend the worry, stress and upheaval that parents go through when their babies are born prematurely. The current length of maternity leave and benefit does not recognise the difficulties faced by the mothers of premature babies who are forced to commence their maternity leave long before their babies come home. Research has shown that mothers of premature babies record significantly higher rates of post traumatic stress disorder than mothers of full-term infants and that these traumatic reactions can remain active in the long term and require extensive follow-up.

I am bringing the motion before the Dáil to shed light on how unfair and unacceptable the current legislative regime is for parents of premature babies and to seek change. Politics can help and has the potential to make a real difference today. The motion calls on the Government to extend the period of available maternity leave and benefit by a variable degree for all mothers of babies who are born prematurely, extending it from the day the baby is born to the day the baby would have been born if born at full-term. In cases where premature babies are kept in hospital past what would have been their full-term, the extended maternity leave and benefit would continue until the baby is discharged. It is essential that the entitlement is made available, in addition to all current maternity leave and benefit entitlements.

The net effect of this change would be that when a baby is born prematurely, his or her mother would not start her six-month entitlement to maternity leave and benefit until the equivalent full-term of the baby has been reached or the baby has been discharged from hospital. While her infant is in hospital, the mother need not worry about eating into her six months of maternity leave. Only once the baby is discharged and is safe and healthy at home should the current six-month period commence.

The motion also calls on the Government to consider extending paternity leave under these circumstances, and to provide additional financial support where necessary for families of premature babies for travel and accommodation costs so the family can stay together. Parents should receive greater support from their employers and, therefore, I call on the Government to arrange that appropriate advice be published for all employers on how to do this and to require employers to have a policy in place for supporting the parents of premature babies. While most employers treat employees who find themselves in these unexpected circumstances with compassion, it is essential that they know how best to support them. New mothers need to feel confident of their rights in the workplace. These are all practical and reasonable steps, and will make a significant difference to parents of premature babies.

It is important to note that not all premature infants have health issues, and not all babies who are born at or past full-term are born healthy. There are many sick babies who are born at full-term whose parents still live in worry and fear for their babies' health, and today my heart goes out to them. I also aware of the fact that sometimes the parents of premature babies may bring home their baby within days of birth, healthy and into a new and happy household. However, for those who are born prematurely the challenges are unbelievably daunting.

In advance of this debate, I received numerous communications and I would like to share one letter I received from a mother of a premature baby. I will read some excerpts to the House. She states:

Dear Catherine,

I am writing to you to share my experiences as a mother of an extremely premature baby who was born four months early in 2014 at the National Maternity Hospital, Holles Street. Patrick arrived unexpectedly at 23 weeks plus one day's gestation weighing approximately one pound four ounces. To get an idea of Patrick's actual size at birth, his body was the size of a mobile phone. His legs were the length of an adult's baby finger.

During labour, I was informed by the consultant neonatologist that Patrick had less than a 10% chance of survival and that they would know within three minutes of his birth whether they would take him immediately to the neonatal intensive care unit (ICU) or hand him back to me to hold in his final minutes of life. I will remember that moment and those words for the rest of my life. There was no joyful cry at birth, only the sound of clinicians working frantically to save our baby boy who faced life's biggest nemesis - death.

My maternity leave of 26 weeks commenced the day after Patrick was born. There were no congratulatory cards, no shiny balloons, no photos of my husband or I holding our little boy. Only silent tears, trying to hold it together for each other, living hour-to-hour, day-to-day for the first two months. 

Our little boy, the apple of our eyes, the beam of our smiles, and the love of our lives, spent the next 18 weeks in ICU. He was on life support for 70 days, had 11 transfusions, an open heart valve, biochemical difficulties, chronic lung disease, hernias, severe reflux and retinopathy... Our world came crashing down when at seven weeks post birth, Patrick had kidney failure and crashed requiring resuscitation. Though our hearts were utterly broken, Patrick never gave up - one of his many traits. We learned that day to never underestimate a premature baby or any child. They can surpass all that is expected of them and much more. They are stronger than any adult. 

After 18 weeks and following Patrick's discharge as an inpatient in Holles Street, I had 8 weeks remaining of paid maternity leave. 

Ten months post birth... I realised I was functioning on autopilot and during a visit to my GP was diagnosed with... post traumatic stress disorder. Discussing one's mental health is difficult and a mother to admit that she feels fearful, anxious, or down, well this is in contrast to what society expects of a new mother and especially of one whose baby has survived [against] the odds. But I don't mind sharing this experience with you and others because I was living every day with a heightened sense of fear that Patrick might die suddenly; that his survival was just too good to be true. However, with the support of my wonderful husband, our families, and a counsellor, I learned how to integrate this traumatic experience into my life in a positive way. 

I end this letter on a positive, Patrick recently celebrated his 3rd birthday and is a beautiful, healthy and independent little boy.

Patrick’s mum, Tara, is here today. Her story is just one story, and there are many more similar stories from mothers, fathers and families throughout the length and breadth of this country. Where are the supports for Tara and the thousands of other mothers every year who face this exhausting challenge of a lifetime? Many people who have written to me are shocked that we as a country have chosen to ignore rather than support and that what I am proposing is not already in place.

Mar is eol do thuismitheoirí, is am faoi leith é nuair a shaolaítear leanbh tar éis aistear naoi mhí sa bhroinn. Bíonn gliondar agus faoiseamh orainn go bhfuil an mháthair in éindí lena naíon tar éis teacht slán trí ghnáth-thriail na breithe. Ach, le naíon a shaolaítear ró-luath roimh am breithe, anuas ar an ngliondar croí, bíonn briseadh croí fosta agus buairt. Níl faoiseamh ar bith i ndán do na tuismitheoirí mar tá an baol ann i gcónaí go bhféadfaí an leanbh leochaileach seo a chailliúint am ar bith. Tréimhse strusmhar, imníoch lán de bhuairteanna breise ata i gceist agus, ar ndóigh, lán de chostais breise ar nós taistil agus lóistín gar don ospidéal agus mar sin de. Bíonn impleachtaí i gceist don teaghlach ar fad.

Feictear dom go bhfuil dlíthe reatha an Stáit ag cur le hualach na máthar in ionad é a laghdú, nó fiú é a roinnt léi. Ach, tá rogha againn machnamh ar an gceist seo agus athruithe a dhéanamh chun maitheasa, ar mhaithe le meabharshláinte agus sláinte fisiciúil na máthar, mar aon le deis a sholáthar don naíon beag bídeach buntáiste a bhaint as teagmháil fisiciúil lena mháthair nó máthair. Is nasc nádúrtha é sin atá riachtanach do fhorbairt an naín leochailigh úd a shaolaítear ró-luath roimh am breithe.

This House has an opportunity to begin to put things right today. Members of all political parties and none have an opportunity to unite behind these mothers, to protect families and children and give them the help that they need and deserve. I implore and urge Members of the House to support this motion, and in doing so to allow mothers to have time to recover from a traumatic few weeks or months, time at home with their baby, time to hold their baby, time to care for their baby and time to watch their baby progress at home. I ask Members to support this motion and give mothers and babies that precious time together.

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