Mamas on Bedrest: One Newborn’s Near Death Experience

March 21st, 2011

I always love to hear back from my mamas on bed rest, so I was especially happy to receive news from Kris Gibson in Ireland about the birth of her son Oliver. However, her shocking story about how she nearly lost her infant son sent shivers through me.  With Kris and her family’s permission, I share the following summary of  little Oliver’s near death experience. This is a summary of the report in the Irish Times (March 8, 2011).

On Christmas morning, about 10 days after Oliver’s birth, Oliver was weak and lethargic. Like any mom, Kris stayed close to her son and later in the day, when her husband checked on them, he noted that the baby was having difficulty breathing and was turning blue. They immediately rushed him through the snow and ice back to the Rotunda, the hospital where he was born,  and within an hour he was on life support. Doctors told his parents he was extremely ill. Tests for meningitis were carried out and he was put on a range of antibiotics. He remained “floppy” for a number of days, showing no muscle tone, no reflexes and very little pupil dilation.

After being seen by a neurologist, his parents were told his problem was most likely neurological, muscular or metabolic. But an EEG test performed to monitor his brain activity seemed normal.

He was transferred, still on a ventilator, to the intensive care unit of Temple Street Children’s Hospital in Dublin where further testing including an MRI scan was performed. It was normal. Several possible causes for his symptoms were ruled out and the thinking was he probably had a neuromuscular disorder, which came as a devastating blow to his parents.

But over a number of days Oliver went from floppy to responsive and gradually recovered. On New Year’s Eve he was out of intensive care, a range of viral tests came back negative and it seemed he had fought off the mystery illness that had afflicted him. He was well enough to be sent home on January 5th, but his parents were still none the wiser as to what had actually happened to him.That evening a pediatrician from Temple Street called them at home to say they had finally obtained a positive result from all the testing they had done on Oliver. He had contracted infant botulism, which is rare and life-threatening, and his stools had tested positive for type E botulism toxin-only the seventh such case reported in an infant worldwide. It was also the first case of any type of infant botulism reported in the Irish Republic.

The hunt began to find the source of the infection. At first Kris was asked to stop breastfeeding in case that was the source. Public health officials visited their house and took a range of samples, including specimens of the supplements Kris took while pregnant and samples of foam used in a recording booth Kevin (Kris’s husband and Oliver’s father) had just constructed. Reading up on botulism on the internet Kris discovered the toxin can be found in soil and felt sure it emanated from their Christmas tree.

However, testing carried out by the HSE, and sent to the UK for analysis, eventually found the source. The toxin was in water in a tank housing two pet turtles in their home as well as in food bought for the pets. The turtles had to be put down, the walls and furniture in the room where they were kept disinfected and the carpet ripped up and replaced.

But the nightmare didn’t end there. Two days after he had been discharged from The Temple Street Childrens Hospital, Oliver showed all the same terrifying symptoms again and had to be rushed back to the hospital where he was put on life support for a second time.  This time the doctors knew what they were dealing with.

The toxic spores which he had inhaled were still in his system but their effect had temporarily been halted by him being on oxygen. Now that he was off oxygen they were attacking his nerve endings again, causing paralysis. Doctors at Temple Street consulted with experts in the UK and US who had previously treated cases of infant botulism. It was decided he needed to be given an antitoxin by IV infusion and the only one approved in Ireland for treating type E botulism toxin was not recommended for use in children, but it was given to him on the basis that the benefits outweighed the risks. Consultation with a world leader on infant botulism at the California Department of Public Health indicated that the type of antitoxin given to Oliver would be effective for only a couple of weeks and further doses in an infant could cause anaphylaxis. A different antitoxin, which would cover him for several months until the toxin was cleared from his system, was required. This antitoxin had been tested and found to be effective by the US government in anti-terrorism research, but which had only been approved by the FDA for use in infants with type A and B botulism. However, the experts agreed it was the best possible treatment available.

Once the experts agreed on the treatment, it was immediately purchased by the federally funded health service and imported to Ireland. This all occurred on Saturday and the medication was given to Oliver on Sunday.  The antitoxin cost about €35,000 (about $57,000) his parents were told, but a few days after receiving it Oliver was well enough to go home. He hasn’t relapsed since, but continues to undergo weekly tests. If three tests in a row are negative for the toxin, he will get the “all-clear”. So far, two tests have been negative.

In early March, the Irish National Health Protection Surveillance Center warned that reptiles such as snakes, lizards, tortoises, turtles and terrapins are not appropriate pets for children under the age of five, because they carry a risk of botulism infection and also salmonella. The reason botulism toxins are so hazardous to infants is because they haven’t yet built up defenses to fight them. These toxins are also a risk for adults with weakened immune systems including those who are pregnant or those with diseases such as cancer.

Over the past two years, a very small number of cases of infant botulism have also been diagnosed in the UK in babies with a history of having consumed honey. As a result, parents are now warned that honey should not be given to children under 12 months of age. However, Oliver’s mum, Kris Edlund Gibson, an actress who has starred in several TV dramas including Judging Amy and Frasier, says that in one of those UK cases the honey didn’t test positive for botulism toxin.

“So it was sort of a mystery how that baby got it. Well after Oliver, the HSE called them and said, ‘Hey, by any chance did you guys have turtles at home?’ They did, the exact same kind of turtles we had and the exact same manufacturer of the turtle food.”

It seems those treating little Oliver Gibson may have finally solved a riddle for more than one family.

This is a stark reminder to us all that the seemingly most insignificant things around our homes can have a huge impact on our newborns. As new parents, be vigilant to everything that even remotely comes in contact with your baby. You just never know. To quote Kris, “Err on the safe side if you’re wondering whether or not you should keep that pet because no pet was worth what we went through . . . it was the most painful situation in my life. It was truly just a waking nightmare.”