Twelve weeks into her pregnancy Samantha Kerr found out her baby would be born with his heart beating outside his chest.

Following a routine scan the 33-year-old from Maidstone was given the news that her son was suffering from ectopia cordis, an extremely rare and deadly complication.

Very little is known about the condition that affects eight in one million births, with the majority of babies stillborn or only surviving for a few days.

To date there are only two known survivors of 29 attempted repairs.

Despite this Samantha and husband Dennis, who got married last Saturday, made the difficult decision to continue with the pregnancy.

"We have not just signed up for a healthy child, we have signed up for a baby and this is what we have been given” — Samantha Kerr

The mother-of-two, from Brishing Lane, said: "We were told it is a very high risk pregnancy and there are concerns as to whether the baby will make it."

She added: "He is moving around and is as alive as he can be and for that reason I didn't want to take a decision on his future into my own hands. So we decided to keep the baby."

Having learned that the baby, who is expected on April 17, is a boy the Park Wood couple have named him Gabriel, meaning miracle.

Teaching assistant Mrs Kerr said: “We just wanted to give him the chance. We were given the decision to terminate the pregnancy or continue with it, whatever we decided it was going to be heart-breaking. There are not that many success stories and that’s why we are praying for a miracle.”

She added that they had found all the information they had online as very little was known about the condition and no literature was provided.

She was left distraught following the news at the start of October and was in tears for days.

In addition to his heart being outside his chest Gabriel also has a small hole in the organ, although doctors say this is quite treatable.

Mrs Kerr added: “We were told because of our age there was a high chance we could terminate and have a healthy child in the future, but we have not just signed up for a healthy child, we have signed up for a baby and this is what we have been given.”

Now the couple are desperately seeking to contact families who have also been affected by the rare condition and are hoping to speak to parents who have experienced success stories.

Mrs Kerr said: “We have found a family in Texas online who have had a success story and have contacted them on Facebook but have not heard back from them.”

Dr Gurleen Sharland, a consultant in fetal cardiology at Evelina London Children’s Hospital, said: "Ectopia cordis is caused by a defect in the chest wall which can lead to the heart being completely or partially outside the body. Sometimes babies suffering from the complication may also be born with other external organs which makes survival more unlikely.

"The condition requires surgery if the baby is to survive but sometimes this is difficult as the heart has developed so long outside the body that the chest is too small to accommodate it."

Mr and Mrs Kerr are appealing to anyone with information or advice on dealing with ectopia cordis to contact them at samanthakerr0@gmail.com.