Mother lucky to be alive after 'rarely seen' condition leads to stillbirth

The couple were told Gabriel may have passed away only a couple of days before Laura went into labour when she had noticed a change in his movements.

Doctors discovered she had been suffering from Acute Fatty Liver Disease (AFLD), which occurs in about 1 in 20,000 pregnancies, usually in the third trimester and is more common in first pregnancies, male babies and twins.

A consultant at the Royal  Alexandra Hospital (RAH) in Paisley told the couple that 15 to 20 years ago both mother and baby would have been unlikely to survive. It is so rare, Mrs McLeish was told that it is not on the ‘tick list’ of conditions that obstetricians and midwifes generally look out for.

Often symptoms of AFLP are non-specific and can be mistaken for another condition, making early diagnosis difficult. They include; nausea and vomiting, abdominal pain and indigestion, excessive tiredness and jaundice.

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Mrs McLeish, 31, who also has a one-year-old son Jude, said: “Through both my pregnancies I had a lot of morning sickness and it dragged on.

“The week Gabriel was born I was quit sick with a lot of heartburn and indigestion and then it started to get really uncomfortable.

“I phoned the doctor and they prescribed some medication to try to deal with  the heartburn but I wasn’t getting any relief.

“Three hours later I realised the cramps I was feeling were contractions so went up to the hospital around 1.30am in the morning.

“Then labour picked up really quickly after that and I was getting sicker and sicker.

“When I went into the hospital, my mum wasn’t allowed in because of Covid so I was on my own when they told me his heart had stopped beating. 

“I was in triage and a few people had to have a look but I kind of knew.

“I had a chat with the midwife and she thought he passed away late on the Tuesday because I felt a difference. 

“He wasn’t kicking and I could feel his swooshing around. I thought he had turned, head down for delivery but they said that is what happens when they pass away. You will feel them floating around but I didn’t realise he had gone.

“Then they allowed my husband to come and Gabriel was born at quarter past five.”

Laura says she can barely remember the next few hours as her condition deteriorated and her liver and kidneys started to fail. At one point it was thought she might require transplant surgery.

The condition is thought to be caused by the cell’s powerhouse, the mitochondria, not breaking down fatty acids into smaller molecules that help the body process proteins, carbohydrates and lipids (fat).

These fatty acids then accumulate in tissues, clogging the mother’s liver and interfere with her normal liver function.

The liver is especially important during pregnancy for mother and baby because a healthy liver removes toxins and other harmful substances from the body.

The condition was previously thought to be universally fatal but aggressive treatment by stabilizing the mother with intravenous fluids and blood products in anticipation of early delivery has improved prognosis.

Laura said: “Only one midwife had ever seen it before at the RAH so my care was directed by specialists in Edinburgh.

“It was like being in some sort of fog. My memory is very patchy. 

“The consultant said around fifteen to twenty years ago I would have been a gonner.

"There was talk of dialysis and organ transplants if they weren’t able to stabilise me. As things are, I was able to return to normal so I’m very lucky.”

Mrs McLeish's last scan was on May 22, when the pregnancy was said to be progressing well.

She said: “He was absolutely perfect. I’m sad now that Johnny wasn’t allowed in due to Covid restrictions.” 

The couple, who live in Bishopton in Renfrewshire, are still waiting for the results of Gabriel’s post mortem which should provide some answers about his death and the risk of any future pregnancies.

They were able to have a funeral service last week which Laura says provided some comfort and have raised more than £7000 for the baby loss charity SiMBA  (Simpson’s Memory Box Appeal) to create a second family room at the RAH. All families are given a memory box to safeguard precious items including footprint pictures and toys.

Laura said: “My memory is very patchy and that’s why the memory box has been so helpful. Even just having the footprints in the clay - it's something that he touched and we can remember how perfect his little hands and feet were.

“It’s massively important for every hospital to have this (family room) because it’s such a strange type of grief. You are not grieving for what could have been, you haven’t had a chance to make memories. 

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“My husband has an older daughter Hollie, who is eight so is old enough to know that something bad has happened so to have these things to show her when she’s older, to allow her to accept her brother as her brother, it's going to be so important later down the track.

Mr McLeish, 32, who works for a technology firm, said the couple has, “never known pain like it.”

He added: “The fact that SIMBA had an ongoing project to fund another family room at the RAH just seemed perfect as it was a way of thanking them while also recognising the staff who dealt with us with compassion and dignity throughout the whole experience.”

Gillian Welsh, Events and Partnership Officer for SiMBA said: “Babyloss is something that our society has become a lot better at talking about but it’s still not talked about openly.

“I just want to thank Jonathan and Laura for their incredible contribution.

"Gabriel’s memory will live on, in this new room that will help so many other families sadly going through the same thing.”

To make a donation go to www.justgiving.com/fundraising/gabrielwmcleish