Life after an ectopic pregnancy

After ectopic pregnancy, couples have not only to face the loss of a child but also fears about future fertility, writes SHEILA WAYMAN

JENNY RYAN and her husband Tom were “delighted” when her pregnancy test came up positive after 10 months of trying for their first baby.

“The idea of anything going wrong was completely alien,” says Jenny. She had it confirmed by her GP and registered with the Rotunda Hospital in Dublin.

But at seven weeks, “I began to get a niggle in my left side.” Although she did not feel ill, she was concerned so she rang the GP’s locum one Saturday evening.

The doctor listed symptoms, of which she had none, and told her she was fine, but if she felt any worse, she should go into the hospital. The discomfort disappeared “and I had nothing for a week until I woke up one morning and collapsed”, at home in Howth.

Tom contacted the Rotunda, and was advised to bring her in. He rang for an ambulance to speed her through the rush-hour traffic that Monday morning in February 2007.

“The paramedics tried to tell me I just had a virus and wanted to take me to Beaumont. I was aware of an argument going on and Tom was saying, ‘No she’s pregnant, she needs to go to the Rotunda.’”

Although the journey took less than 15 minutes, she became unconscious and was having convulsions. She remembers coming to in the emergency room, where they were preparing her for surgery on an ectopic pregnancy, and a doctor saying “something awful” about how badly her fertility could be affected.

“I wasn’t really with it, but I remember being struck, not only am I sick but now you are telling me I can never have children.” That doctor was quickly removed from the room in what, she says, was one of the “bizarre moments” in a “very surreal” experience.

“Tom was told to ‘prepare for the worst’ because it had gone to such a stage with internal bleeding.”

An ectopic pregnancy is one where the fertilised egg implants outside the womb (uterus) – in about 95 per cent of cases it will be in one of the two fallopian tubes. There is no chance of the baby surviving, but if it is undetected and continues to grow in the early weeks, it can cause a life-threatening rupture inside the mother.

At least one in every 100 pregnancies is ectopic but diagnosis can be difficult because the symptoms (see panel) may mirror the signs of normal early pregnancy. Some women will miscarry without ever knowing it was ectopic.

For those diagnosed, treatment will vary depending on the condition of the woman and how far the pregnancy has progressed. When it is picked up early, an injection of methotrexate, which stops the growth of the embryo, may suffice, otherwise surgery is required, either “keyhole” (laparoscopy) or, in emergency cases, open abdominal surgery (laparotomy), both of which often result in the loss of the affected tube.

In the wake of an ectopic pregnancy, a couple have not only the loss of a baby to come to terms with but also fears about future fertility being compromised.

What Jenny found very frustrating, after she had lost the baby and her right fallopian tube, was that “everybody kept telling me I was lucky. I was just screaming inside ‘how dare you tell me I’m lucky’”.

It caused tension between even her and Tom. He was just so grateful that Jenny was still alive, but “I didn’t feel that in the slightest”, she says. “It took a very long time for me to acknowledge that I was as sick as I was.”

Jenny’s fears about her fertility seemed to be confirmed after a further two and a half years of trying, without success, for a baby. They decided in May 2009 to go for in vitro fertilisation (IVF), but pre-treatment blood tests showed she had an underactive thyroid.

Medication corrected this by the beginning of August 2009 and, before the end of that month, she had conceived. They have an 18-month-old son, Tadhg, and she is now three months pregnant with their second child, “which took about three weeks to happen, so we are kind of shocked!”.

To anybody who has had an ectopic pregnancy, she wants to stress there is “plenty of hope” for future pregnancies, “even though for a while I didn’t think there was”.

She also advises: “Don’t pretend you’re fine because I did that for a while and I ended up crumpling.” And, she adds, as a professional counsellor, “I should know better!”

The majority of women who have had an ectopic pregnancy go on to have a healthy pregnancy, although their risk of having another ectopic is increased by about 10 per cent. And if two ectopic pregnancies have resulted in both tubes being removed, IVF is the only option.

Risk factors for ectopic pregnancy include pelvic inflammatory disease, endometriosis, previous surgery in the abdominal area and taking medication to stimulate ovulation.

Unlike Jenny, who knew nothing about ectopic pregnancies before she experienced one, Deirdre Maher is a nurse and actually suggested the possibility to a doctor when she had intermittent pain in her left side soon after miscarrying a baby at eight weeks.

“It was dismissed out of hand as being way too rare and my husband was told it was all in my head, that it was psychological and I wasn’t coping with the miscarriage and to take me off on holiday.” They had a trip to New York arranged, so they planned to go ahead.

But as they booked into a hotel at Dublin airport the night before, she collapsed in the lobby. Her husband, John, drove her to Beaumont Hospital where an ectopic pregnancy was immediately suspected and she was transferred to the Rotunda. A scan confirmed that the miscarried baby’s twin was implanted in a fallopian tube; she was taken straight in for emergency surgery.

“When the doctor came out of surgery, he said to John he was very lucky to still have a wife. He said, had I boarded the plane, the cabin pressure would have killed me. It was very touch and go.”

Within a month, they had the loss of two babies and one of Deirdre’s fallopian tubes to deal with.

The toughest part, she says, was going in for that surgery at 11 weeks pregnant, when the baby was still alive – albeit with no prospect of survival. “It is very hard knowing that they are removing a live baby, even though it’s very small. And they gave me a photograph afterwards. You could make out the shape – in the tube.”

Due to lack of awareness, ectopic pregnancy is often confused in people’s minds with a miscarriage, but a miscarriage is very different, stresses Deirdre who, in the six years since, has had three healthy children – now aged five, two and 14 weeks – as well as three miscarriages. “The way I see miscarriages, they happen for a reason. It was nature really; there was something obviously very wrong with the baby.

“The killer for me in the ectopic was the fact that the baby would have probably been fine if it had not got stuck on the way down the tube.”

When she was recovering from the surgery, Deirdre was conscious that the hospital had no leaflet about ectopic pregnancy and the only group she could contact was the Miscarriage Association of Ireland.

Living outside Bunclody, Co Wexford, she knew nobody else who had had an ectopic pregnancy, and about a year later she posted on a parenting website to ask if anybody who had had one wanted to get in touch.

Jenny was the first to reply about two weeks later, followed by Helen Groves. The three of them met and started work on a support group, which was initially under the wing of the Miscarriage Association but, as more women came on board, was established as a separate charity last year.

Its aim is not only to support those affected but also to raise awareness of the condition, among health professionals as well as the public, because early diagnosis and treatment can be crucial for preserving fertility.

“Going through something like this as a man is very hard,” says John, who bottled up his feelings as he tried to stay strong for Deirdre. It was only the following Christmas, as he looked at a silver angel decoration on the tree that had been given to them by the Miscarriage Association, that he cried for the first time – “for our little twins and for relief that I still had my wife with me”.

Responses to having an ectopic pregnancy are very individual, says Sheila Power, clinical midwife specialist in bereavement at the National Maternity Hospital, Holles Street.

“Medical management for some parents is quite disturbing because they feel at that moment the foetus is still alive. It can go against some of their religious and cultural views.”

She supported the setting up of Ectopic Pregnancy Ireland because she feels it is important that people have a place to talk about their experience and what the loss means. “The majority probably won’t choose to speak,” Power adds, “but there are people who find shared experiences and talking about them very helpful.”

BABY JO: 'NO MATTER HOW BAD THINGS SEEM, THERE IS HOPE'

There were times when Susanne Brodigan looked at herself in the mirror and wondered if her body was ever going to be able to carry a baby.

But, after three ectopic pregnancies and the loss of both her fallopian tubes, she is now very happily and healthily pregnant.

“I was very, very unlucky,” she says. “But one thing my story shows is it doesn’t matter how bad things seem, there is hope.”

Her first ectopic pregnancy occurred shortly after she and her husband, Adrian, started trying for a baby in 2008. She had got what she thought was her period and was not too concerned about subsequent spotting until she started getting shooting pain in her backside.

Her GP did a pregnancy test and it came up positive. “It was a bit of a shock, obviously, because I had thought I had had my period.” However, she knew instinctively that something wasn’t right.

She was scanned at the early pregnancy unit (EPU) in the Rotunda, which showed nothing, and had blood samples taken. When she returned some days later they said it looked as if she had miscarried but, while awaiting results of a second set of blood tests, an internal scan confirmed it was an ectopic pregnancy.

After surgery to have it removed, and losing a tube in the process, she rationalised to herself that it was one of those things that happens and was hopeful she would get pregnant again quickly.

It was nearly a year before this happened and, relieved that she had no symptoms of an ectopic pregnancy this time, she booked a trip back to her native Austria to break the good news to her family.

“I went in for a routine early scan because I had had an ectopic. You expect to go in and get the picture.” Instead they learned it was another ectopic pregnancy.

“I just screamed when she told me. My life was turned upside down because I was nine weeks and I knew at that stage there was no way they were going to be able to save the tube.”

The EPU was “brilliant”, she stresses and IVF was mentioned fairly quickly, so “even though it felt like it, it wasn’t totally the end of the world”.

Taking time to come terms with what happened, she wanted to learn more about ectopic pregnancies. The Miscarriage Association put her in contact with three women who were offering support.

“It was such a relief to learn that I wasn’t on my own,” says Susanne, who put a lot of time and effort into helping the three establish Ectopic Pregnancy Ireland. “It was very therapeutic.”

In May 2010, she and Adrian started IVF and had a “textbook” cycle, resulting in eight embryos. One was implanted and the rest frozen. About 10 days later Susanne started bleeding, and they were “devastated” when she did a pregnancy test and it was negative.

Three weeks after the transfer, she was still bleeding on and off, and the hospital advised her to do another test; this time it was positive.

Again she knew something wasn’t right, but it was a week and a half before she was diagnosed with a third ectopic pregnancy – but at least it was early enough to be treated with methotrexate and did not require surgery.

In September 2010 they embarked on another cycle, and it failed, but this summer they tried again and their much-longed-for baby is due next March.

ECTOPIC PREGNANCY: WHAT TO LOOK FOR

The symptoms of an ectopic pregnancy vary and this, along with the fact that they often mirror what is expected in a normal pregnancy, can make diagnosis difficult. Signs to look out for include:

- A late or missed menstrual period.

- Abdominal pain: it may be constant or can come and go.

- Vaginal bleeding, usually light, and again might be constant or intermittent.

- Pain or diarrhoea during a bowel movement; pain when passing urine.

- Nausea.

- A positive urine pregnancy test. However, in some cases of ectopic pregnancy. a urine pregnancy test is negative.

- Feeling light headed, faint or losing consciousness.

Source: ectopicireland.ie

For details, see ectopic ireland.ie