British Columbia

Surrey twins beat incredible odds, parents raise awareness about rare disease

Twins Jaxon and Axel weighed less than three kilograms combined when born more than two months premature. The pair spent 147 days in a neonatal care unit. Now their parents are home with them and sharing their experiences with twin-to-twin transfusion syndrome.

Twins born more than two months early survived twin-to-twin transfusion syndrome

The Martins, from left: Michelle, Axel, Chris and Jaxon. The family hopes to raise awareness about twin-to-twin transfusion syndrome. (Tina Lovgreen/CBC)

A family in Surrey, B.C., is thankful to be home all together after twin boys Jaxon and Axel beat the odds of even being born in the first place.

The pair were born one minute apart in April to parents Michelle and Chris Martin, more than 10 weeks early, surviving a rare syndrome that usually ends the majority of pregnancies.

"They said they were the sickest babies at B.C. Children's [Hospital in Vancouver] at the time," said Michelle Martin from her home in Surrey on Friday where both boys were dressed in identical jumpers emblazoned with shamrocks.

Axel and Jaxon still face serious health complications. (Tina Lovgreen/CBC)

The twins were born weighing a combined weight of less than three kilograms — Axel 0.8 and Jaxon 1.3 —  and spent 147 days in the neonatal intensive care unit. They were diagnosed with twin-to-twin transfusion syndrome (TTTS).

It's a rare condition that causes uneven blood flow between identical twins who share a placenta — one child ends up getting too much blood, while the other gets too little.

It can cause serious health problems in developing babies including uneven growth, anemia, heart failure and neurological problems.

According to Multiple Births Canada, approximately 260 pregnancies out of 6,000 sets of twin, triplets or more are affected by TTTS in Canada. It has no known cause.

Michelle Martin with son Axel who was born one minute earlier than his brother. (Tina Lovgreen/CBC)

Both Jaxon and Axel had severe brain bleeds when they were born by C-section. Jaxon underwent brain surgery when he was just 15 days old. He also had heart failure and chronic lung disease.

"So many factors that could have independently ended their lives," said their mother. "They've definitely conquered all of that to still be alive."

The Martins are grateful for the care they got in hospital.

NICU nurses: 'supernatural beings'

"The nurses in the NICU are a different kind of human being," said Michelle. "They're not even human, they're like supernatural beings."

Still the Martins say that even though there is a protocol of care for TTTS in Canada, not all mothers receive it. Michelle Martin has been documenting the family's experiences with TTTS on a blog and hopes to raise awareness about it.

The Martins advise families pregnant with identical twins to seek out an internal fetal medicine specialist around 16 weeks and request ultrasounds every two weeks.

"You really have to advocate for yourself with this, if  you're pregnant with identical twins," said Michelle.

Meanwhile the family is now taking it day by day. The twins still face many challenges — feeding them takes two hours— and could have future health complications such as cerebral palsy.

Chris Martin, with son Jaxon, says he's happy to be able to hold his children. (Tina Lovgreen/CBC)

Chris Martin says he is enjoying the tender moments with his boys.

"Holding them is very heart-warming and very satisfying and makes me happy," he said.

With files from Tina Lovgreen.