Living with the grief of sudden infant death

 

Every week in the Republic at least one child dies unexpectedly. Nine out of 10 of these deaths, known as Sudden Infant Death Syndrome (SIDS), happen in the first year of life

“Caoimhe kept asking people when the pain was going to stop. She knows now that it doesn’t. ‘You just learn to live with it. Time is the only thing that teaches you that. It is always going to be with you and in the end you want it to be with you because not to have it would be letting go and you don’t want that

TUESDAY STARTED much like any other. Sixteen-month-old Oscar Muldoon Hennessy was up at half six, impatient to get on with the day.

His father, Noel Hennessy, took his turn to get up with him, but the good humoured toddler soon wanted his mother, Caoimhe Muldoon, in on the action.

“He was running around, all excited, came banging on the mattress for me to get up,” she recalls.

After breakfast they left their home in Crumlin, Dublin to drive into Trinity College, where Caoimhe is doing a PhD in botany and Oscar was going to the creche. She hopped out of the car to walk to the Botany department, but not before reaching into the back and giving Oscar a kiss as Noel prepared to bring him over to the college creche. It was the last time she saw her only child alive.

The floppy-haired, cherubic-faced little boy was in great form at the creche and by 12.30pm he was ready for his regular mid-day nap. Two hours later the staff felt he had been sleeping long enough and went to wake him.

It was soon after 2.30pm on May 29th, 2007, that Caoimhe got the call. “I was in the botany department which is just a few minutes away. I was told he was very sick. I came running over and all the security guards were there.

“Nobody knew what to tell me or how to tell me anything but they wouldn’t let me into the room as people were in there working on Oscar. I just remember a doctor telling me it was very, very grave,” she says, tears falling quietly, as they always do when she talks about her son.

“Then they ran out with him in their arms and they brought him in the ambulance. I was in the emergency car with the driver and I just remember waiting at Temple Street Hospital.

“I rang Noel and told him to come in. At that stage I thought he was going to be very, very ill and was kind of preparing myself for that.”

She cannot recall who told her that Oscar had died. “I just remember a really strange noise – and it was me,” says Caoimhe (35), her voice dropping to a whisper.

Hospital staff put Oscar on a little bed and the distraught couple went into the chapel with him. Then, “Pat the mortician, he was lovely, he brought us aside and said we would have to make decisions about what should be done, probably before the extended family arrived.

“I can just remember thinking, I can’t make these decisions. I am too young for this; some other adult should come in and sort it out.”

A post-mortem needed to be done, so it was when they returned to the hospital the next day that they were told they could take Oscar home.

“We carried him to the car and I can remember thinking, are you allowed to walk around with dead people? We just held him in the car on the way home.”

Oscar stayed in the house with them for two nights. “During the day we put him in our bed and at night we put him back into his cot.”

All the family came up from around the country and many friends dropped into the house. She is very glad now that they waked him in this way.

“It’s extremely important, just to have people come in, see him and talk about him. He was a great auld fella, so many people knew him. He was always around the college and my husband works as a sound engineer so he was always around, a little groupie.”

They had a Humanist ceremony for Oscar at Mount Jerome crematorium, conducted by Dick Spicer who had done Oscar’s naming ceremony eight months before. It was packed out.

Caoimhe describes the force of sympathy as “almost scary”. “It nearly felt like you had taken all your clothes off and everyone was staring at you, which they were of course.

“To be honest, you are completely insane at that stage. The pain is too great. Sometimes you can look kind of calm around that time because of the shock. It kind of numbs you.”

She remembers going back to the Lord Edward pub in town for soup and a sandwich with friends and talking to people, smiling.

“That shock stays with you for an awful long time. Then that shock leaves and it is devastation. Those first months are so difficult. There really is a feeling that you don’t want to live. There is no point.

“For a long time we didn’t go anywhere at all. We drank way too much. Did make a few half-hearted attempts to finish things but luckily didn’t have the medical knowledge or the guts to do it.”

She had been given a leaflet about the Irish Sudden Infant Death Association (ISIDA) in the hospital straight after Oscar’s death, but it was weeks afterwards that she made contact. The support she and Noel have received since has been “a complete lifeline”, she says.

The voluntary organisation’s services range from providing information, a helpline, counselling, support groups and remembrance services, to collecting information on all sudden, unexplained deaths in children from birth to two years of age through the National Sudden Infant Death Register, which it established in 1992.

The register, which is based in Temple Street hospital and funded by the Department of Health and Children, has a staff of three to carry out research and education projects based on that information.

ISIDA is raising awareness of all its work through a revamped website and new, multilingual CDs, which will be launched by the Minister for Children Barry Andrews, at its offices in the Carmichael Centre on Saturday (March 7th).

Every week in the Republic at least one child dies unexpectedly. Nine out of 10 of these deaths, known as Sudden Infant Death Syndrome (SIDS), happen in the first year of life but it can occur at any age, at any time of day or night and in any place where a child is resting.

Caoimhe says she became obsessed with trying to find out why her son died. “I could not understand how he could be that perfectly healthy one minute and then . . . gone. I am from a science background so I started looking into heart arrhythmia and the family got checked for that. In the end it looks like it was mitochondrial disease, although you’ll never know for definite.”

A mitochondrion is like the “battery of your cell”, she explains, and it contains maternal DNA, but DNA from both parents controls the actions carried out in it. “The thought now is that Noel and myself are carriers and it was recessive, so neither of us is affected. But perhaps Oscar got two faulty genes.”

Most parents who experience sudden infant death will not get that close to a possible reason why their child died. All they can do is contribute to research, and so help identify risk factors, such as smoking, overheating and a child sleeping face downwards.

Hospitals usually notify ISIDA of a sudden death, after asking parents if they want to be contacted by the association. It is the support services co-ordinator, Ger O’Brien, who first calls the parents, sometimes only hours after it has happened. At that stage she is offering advice on the best way to handle the immediate aftermath and the vitally important ritual of saying goodbye.

“It is a very difficult call to make,” she says. A lot of people ask her how does it work, that a stranger would be able to relate to deeply distressed parents, but it does work. “People are very vulnerable and any support they can get they take.”

Parents can feel that everything is happening round them and it’s out of their control. “So it’s to try to get them to slow it down and think. They have choices,” says O’Brien, who is a psychotherapist.

“It’s the ritual of bringing the child home. Being allowed, if they want, to bring the child into the bed with them; allowing the other children in the house to play around the child.

“It’s all that over a number of days, it can’t be just a day because it’s too soon. Something happens in those first few days that they need to try to get them through the funeral.”

The type of grief they’re going through is very complex because they’re grieving for a future, she explains, so they do not need any additional regrets about what they did or didn’t do in the process of saying goodbye.

“Parents begin to trust you then because you have been with them at such a vulnerable time and I find it is easier for them to pick up the phone and say ‘Ger, can you do this, or can you do that’.”

O’Brien makes her first home visit after about four weeks, offering counselling and also weekend residential therapeutic groups, which parents might join about four or five months into their bereavement.

It is these weekends, for small groups of parents who have lost a child to SIDS, which have been so invaluable to Noel and Caoimhe.

“It was such a relief to be able to sit with people who knew what you were talking about and were in such pain; you could actually have a few drinks with them and talk and laugh because you knew they understood how you felt because the rest of your family, no matter how wonderful they are, unless it is something that has happened to them . . .” Caoimhe trails off.

For some of the sessions the men and women are split up. This is to let them have space and time out without having to mind each other, explains O’Brien.

Men tend to bottle up their feelings as they try to support their partners.

“The minute you bring the men into their group, it’s just like a waterfall,” she says. “They just let rip; they’re angry, they let it out, how difficult it is for them.”

It is only recently, says Caoimhe, that she and her husband have started talking about Oscar. “We would sit with each other and be upset but we found it very hard . . . just remembering how proud we were of Oscar. And, as Noel said last time we talked, how we are still so proud of him.”

It will always be with her that he wasn’t in her care when he died. “I wasn’t there. I didn’t put him to bed.”

On the first anniversary of Oscar’s death, the Trinity creche invited them to a ceremony it was having for him that morning. She says it was lovely to see the staff again and talk to them.

“Before that I was hiding every time I saw them, just because I thought I would break down and I didn’t know what to say.”

They have had many other “milestone” days to get through. “The lead-up is worse; the actual day tends not to be so bad. It’s like I know now . . . Christmas and Oscar’s birthday was January 31st.

“I have kind of disappeared for the last two months. I do that and it is only afterwards, when I look back, that I can recognise it. I don’t really want to talk to anybody; I want to be on my own.”

She agrees it is “so, so hard” for the marital relationship. “Grief is very selfish. You are on your own, locked, and it is very, very hard to reach out to someone else in grief. For a long time we lived in our own world.”

Immediately after Oscar’s death, they went down to west Cork, where Noel’s other son, Aaron (17), lives with his mother, Pauline Carey.

“We stayed away for a few weeks and drove around to people,” says Caoimhe. They could hardly bear to go back to their silent home and to face all the places in their neighbourhood where Oscar had been.

“Even to go down to the local supermarket . . . He had started to walk into Tesco’s. There are all the little rides there and he had developed such an attraction to them. To walk past things like that, to go into the swimming pool again where we used to bring him. Anything like that was so difficult because all you could see was him.’’

They have his ashes at home and lots of photographs. “We still have Oscar’s cot up. At some point we need to take it down and we still have his clothes in the chest of drawers.

“We just couldn’t put away his things. For a long time we still had all his toys in the sitting room in a big cardboard box. Some people did find that really strange; little pictures stuck up that he had allegedly painted in the creche.”

Now they have put the toys under the stairs and she has painted the kitchen so Oscar’s pictures are upstairs. “Gradually you try to move on.”

In all the counselling Caoimhe has undergone, she kept asking people when the pain was going to stop.

“It doesn’t,” she says now. “You just learn to live with it. Time is the only thing that teaches you that. It is always going to be with you and in the end you want it to be with you because not to have it would be letting go and you don’t want that.”

Recently she has found herself having nice memories too about Oscar, half laughing to herself as she recalls his antics. “For so long, all I could remember was around his death and the days afterwards.”

Will they try for another baby? “We’re thinking about it,” replies Caoimhe. “Sometimes we think yes; sometimes we think no.”

For more information on the Irish Sudden Infant Death Association, see isida.ie or contact 01-8732711; its confidential helpline is 1850 391 391, which is monitored seven days a week.

Caoimhe Muldoon is running the women’s mini-marathon in Dublin on June 1st in aid of ISIDA; anybody wishing to join or sponsor her can contact the association

swayman@irishtimes.com