Born Sleeping: Uncovering Stillbirth
As a little girl all Jacqui Scott ever wanted to be when she grew up was a mother. She dreamed about babies, and the birth of her first child only strengthened her desire for more children.
"My first baby came into the world when I was just 18," Jacqui says. "But she was so wanted that age didn't matter."
But Jacqui's dream of motherhood hasn't been as easy to achieve as she might have hoped. After suffering 14 devastating miscarriages, including one ectopic pregnancy after which she had to have one fallopian tube removed, Jacqui finally fell pregnant with a 'sticky' baby.
"At six weeks we saw the baby's heartbeat, at ten weeks I saw my little baby wave at me on a scan, and at 13 weeks I graduated from the recurrent miscarriage clinic. It felt like our dream was coming true," she says.
Like most women, Jacqui felt that having gotten through the first trimester, the rest of her pregnancy would be smooth sailing, but sadly that was not the case. Her son Riley was stillborn at 38 weeks due to a cord accident.
"When I first heard those words, 'I'm sorry, there's no heartbeat, your baby has died,' I didn't believe it, how could we have come this far only to have our precious baby taken from us? Then I looked at my midwife and saw the tears pouring down her cheeks and I knew it was true," Jacqui says.
And Jacqui is not alone. Up to 1% of all pregnancies in New Zealand end in a stillbirth, defined as the loss of a baby after 20 completed weeks of pregnancy or with a birth weight greater than 400g. According to The Auckland Stillbirth Study (TASS), that number may be increasing, and disturbingly, the cause of many of these stillbirths remains a mystery.
TASS has been set up to try and answer some of the questions surrounding stillbirth and the risk factors that may contribute to stillbirth with the hope of reducing the number of babies who die before they are born. Conducted over a three year period, the study will look women whose babies are stillborn after 28 weeks of gestation compared with a control group of women who have ongoing pregnancies at the same gestation.
According to TASS, a number of risk factors are known to be associated with stillbirth internationally, including advanced maternal age, obesity, foetal growth restriction, low socioeconomic status and smoking, but there are no published studies to illustrate this.
Auckland midwife and TASS Study Coordinator Tomasina Stacey says that the decision to concentrate on babies stillborn after 28 weeks, rather than at an earlier gestation, reflects the higher percentage of unexplained stillbirths after 28 weeks, and the high chances of survival the baby would have had, had he or she been delivered alive.
"Stillbirths are classified in a number of different ways depending on the stage of pregnancy at which they occur," she says. "Some classification is useful in order to make comparisons, but on an emotional level it can be quite unhelpful, and in fact can cause pain and distress at times. The size of the life does not equate to the grief, regardless of when the birth/death occurred this is still someone's child."
"If we are able to identify key demographic and or risk factors for stillbirth the long term goal would be to develop strategies for prevention," Stacey says.
Carley Rivers knows why her daughter, Julia Rose-Joy, was stillborn at just 24 weeks gestation. Following an earlier pregnancy, Carley's body had developed anti-k antibodies and a tiny 3ml of Julia's blood crossed the placenta into Carley's blood stream which reacted with these antibodies causing foetal hydrops. But while knowing the cause of death has been some comfort to Carley and her husband Phill, it doesn't make the pain of losing Julia any easier.
"I hadn't noticed anything different in the days beforehand," Carley says. "It wasn't until I went to the midwife and she had trouble finding the heartbeat that I began to feel like something was wrong. But I could never have imagined. After the scan, and hearing those words that no parent should ever have to hear, I just broke down in tears of anguish."
Despite initially wanting a caesarian section, Carley was told that she would have to deliver Julia vaginally, the preferred method of delivery following a stillbirth as it reduces the risk of complications in subsequent pregnancies.
"We ended up going home that night with Julia still inside me" Carley says. "I kept dreaming that it was all a nightmare and that I would wake up and it wouldn't be real, but it was."
On the morning she was to be induced, Carley remembers not wanting the day to start.
"I just wanted to keep my little girl inside me where she was supposed to be," she says.
Julia was born after just two hours of labour, but unlike the birth of their son Bayden, now 5, for Carley and Phill there were no tears of joy, only sadness.
"She came into this world silent, peaceful, still," Carley says. "She didn't move or cry."
Riley too came into the world silent and peaceful, and Jacqui says reality didn't begin to sink in until she held him in her arms.
"I had waited five years to hold this baby," she says, "and I longed to hear him cry or see him reach out to me, but he didn't. It was just like he was sleeping. He had chubby cheeks and a little button nose, he was perfect in every way, and his skin was so soft and smooth."
Jacqui describes the weeks after Riley's birth as the most difficult time in her life, and says that she will never be the same. Since losing Riley, she has gone on to have two more sons, Kairyn (now 19 months) and Caden (now six months), but she admits that her pregnancies with both boys were a difficult, stressful and anxious time.
"Right up until they were actually in my arms I found it hard to believe that they would be born alive, I worried constantly, and with both of them I was induced early because of what had happened to Riley."
Stacey says that this is common practice in pregnancies which follow a late or unexplained stillbirth, and describes it as one of the preventative measures obstetricians recommend during subsequent pregnancies. The most important advice that she has for parents considering another pregnancy after losing a baby to stillbirth is to start planning for it before conception even occurs.
"The crucial thing is to get a full and thorough follow up in relation to the stillbirth, to talk with a specialist who has all the available information on the pregnancy and investigations round the possible cause of the death so you can make a plan for any future pregnancy. This is usually offered 6-8 weeks following the loss of a baby."
Stacey also recommends having full tests, including a post mortem, saying this is the best way of determining whether any specific extra testing or supplementation/medication is recommended during a subsequent pregnancy.
In Carley's case, doctors have advised that she have more regular monitoring, including weekly blood tests, to keep an eye on the level of antibodies in her blood and pick up any potential problems as early as possible. But Carley and Phill are yet to decide whether they will try for another pregnancy.
"That decision is still unmade," says Carley. "There are so many things to consider that I would never even have thought of before losing Julia."
Both Carley and Jacqui say they still think of their babies often, and the tears are still frequent.
"I think of Riley every day," Jacqui says, "sometimes through tears, sometimes just to remember how happy I am that I had the chance to nurture him and how blissfully contented he made me whilst he was here with me. I have grown and I am stronger for I have known a love greater than any I have ever felt before."
"Most people only dream of angels, we briefly held one in our arms, and she will always be our little girl."