Parents Tony Rushe and Jenna Bannon were devastated when their baby son Anthony was diagnosed with a rare and incurable disorder when he was only a few months old.
Anthony, who had Krabbe Disorder which affects only one in 100,000 babies, died a year ago just after his first birthday. His heartbroken parents now have new joy in their life with baby Ashleigh who made her arrival into the world against all odds. AASMA DAY talks to Jenna and Tony about Ashleigh’s battle for survival and why they feel her big brother is watching over her.
AS one life ended, another one began.
During the last couple of weeks of baby Anthony Rushe’s life, mum Jenna Bannon discovered she was pregnant.
It came as a total surprise to her and partner Tony Rushe and the couple were so wrapped up in caring for Anthony, the news didn’t really register.
However, a couple of weeks later, just two days after Anthony lost his battle, Jenna suffered a bleed and they went to hospital and saw their new baby’s heartbeat for the first time.
Jenna, 28, who lives in Ashton, Preston, recalls: “Anthony passed away and we saw Ashleigh’s heartbeat just two days later.
“It was a really bad time as we were so upset at losing Anthony.
“I must have only been about five or six weeks pregnant and we ended up at the hospital because we thought we were going to lose the baby.
“When I saw Ashleigh’s heartbeat for the first time on the screen, I felt an overwhelming sense of happiness after all the grief.
“It felt as though Anthony’s heartbeat had stopped and Ashleigh’s heartbeat had started.”
Jenna and Tony were overjoyed when their first baby Anthony was born on December 11 2013 and felt their lives were complete.
To begin with Anthony progressed well and to their delight, he started smiling at his parents.
However, from the age of about two-and-a-half months, he began crying a lot through the day and night.
When he cried, Anthony gasped a lot causing wind to become trapped and build up. As a result, doctors and health visitors believed his crying was caused by colic which is very common in babies.
Tony and Jenna tried everything from changing Anthony’s formula to a variety of colic medication but he carried on crying. As he was their first baby, they thought it must just be the norm.
However, Jenna’s mother’s instinct prompted her to go to a GP again and she told him she thought something was very wrong and that she wanted Anthony checked over.
The doctor agreed and noticed Anthony was floppy and not holding his head up. He asked Jenna when Anthony had last smiled and she told him not since he was two-and-a-half months.
Anthony was admitted to Royal Preston Hospital where doctors began carrying out tests and investigations.
An MRI scan was carried out and a distraught Jenna and Tony were told Anthony had a metabolic neurological disorder affecting the brain.
However, as there were many different kinds, a variety of blood tests were performed over the next week to determine what condition Anthony had.
Nothing could have prepared the couple for the nightmare diagnosis they received.
Medics told them Anthony had a very rare condition called Krabbe Disease which only affects one in 100,000 babies.
It is a disorder that affects the brain and over the course of a year, the body’s nerves degenerate until the child loses the ability to hear, see, feel, swallow and eventually breathe.
A devastated Tony and Jenna were told the average life expectancy was 13 months and there was no cure.
The couple vowed to fill Anthony’s short life with as many happy memories as possible.
One of the most difficult things for them was seeing Anthony deteriorate and feeling helpless knowing he was only going to get worse.
Anthony turned one last December and managed to spend Christmas with his family before losing his fight for life shortly afterwards.
Only two days after Anthony’s death was when Tony and Jenna saw Ashleigh’s heartbeat for the first time and they felt a glimmer of hope after the tragedy of losing their son.
However, things were far from plain sailing and only weeks afterwards, they almost lost their unborn baby.
When she was 11-weeks pregnant, Jenna had to go to hospital to have a Chorionic villus sampling test (CVS).
This test is offered during pregnancy if the baby has a high risk of a genetic disorder. With Anthony having had Krabbe Disease, they wanted to make sure the new baby didn’t have the condition too.
The CVS test involves removing and testing a small sample of cells from the placenta.
Jenna explains: “The test involved them putting an injection into my belly to take the cells from my placenta.
“When they did it, they accidentally ruptured the amniotic sac which the baby was in and my waters started leaking out.
“I only realised a bit later as every time I moved, my waters would gush out.”
The concerned couple rang the doctor and went to primary care and a specialist midwife then arranged for them to have a scan.
To their despair, Jenna and Tony were told that Jenna had lost all her waters and to go home and expect a miscarriage.
Jenna says: “The sonographer told us she couldn’t see any water and as she didn’t want to give us any false hope, she told us it was unlikely our baby would survive.
“When we asked what the chances were of the baby surviving, she told us one in a million.
“She said it was very rare for the waters to build up again.”
Jenna felt losing her new baby after the pain of losing Anthony was too cruel and deep in her heart she knew her unborn baby had to survive and was determined to do everything in her power to make that happen.
She explains: “I just thought: ‘It can’t happen, we can’t lose her too.
“It didn’t seem right. How could Anthony die and then we see Ashleigh’s heartbeat two days later only for her to not make it?
“I knew in my heart that Ashleigh would survive.”
Jenna went home and lay on motionless for three weeks. As the test was done on her right hand side, she lay on her left.
Jenna says: “I lay down for three weeks and didn’t move apart from to go to the bathroom.
“I wanted to do everything I could for the baby.
“We then went back to the hospital for a scan and they discovered the waters had built back up again despite it being a one in a million chance.”
Jenna firmly believes Anthony is watching over his little sister and looking out for her. From the moment she and Tony first saw Ashleigh’s heartbeat, they have felt Anthony’s presence.
Jenna says: “When we first saw Ashleigh’s heartbeat, I felt Anthony was there and when the hospital told us that my waters had miraculously built back up, I felt Anthony had played a part in it.
“The test revealed Ashleigh does not have Krabbe’s Disease.
“It is as if Anthony has been looking after his sister and saving us from more heartache.”
Jenna was scanned every couple of weeks throughout her pregnancy to make sure Ashleigh’s lungs were developing.
Ashleigh was born on September 20 and was healthy and well except for being born with clubfoot meaning she has had to wear casts for the first months of her life.
Jenna explains: “Because of the restricted space in the sac due to losing the waters, Ashleigh was squashed up and as a result she has talipes, which is also known as clubfoot.
“She has been wearing casts on her legs but they will hopefully come off in a few weeks.
“But for this to be the only thing wrong when she only had a one in a million chance of surviving is amazing.”
Tony, 29, says: “It is so overwhelming that Ashleigh is actually here after the issues we went through during the pregnancy. It was awful when we were told she wouldn’t survive.
“I don’t know how we would have coped if Ashleigh hadn’t survived after losing Anthony.
“It was all very scary until the final point when Ashleigh was born.
“The fact I get to go home and see her at the end of a day is wonderful.
“When Anthony had his final Christmas with us last year, he was very poorly and having seizures and it was a sad time for us as we knew the end was near.
“With Anthony, we were always thinking in the short term as we knew he wasn’t going to be around very long.
“This Christmas will be more about hope and we can look forward to things and think about the future.
“Ashleigh was a bit of a surprise but has been a fantastic surprise who has brought us so much happiness.”
Jenna says Ashleigh looks very different to Anthony when she is awake, but just like him when she is sleeping.
Smiling, Jenna says: “Ashleigh is great and already a bit of a character.
“She is really good and was sleeping through at 10 weeks and when she cries, we know exactly what she wants.
“Ashleigh is smiling and cooing and feeds really well. She can hold rattles and holds our fingers and has a really fierce grip.
“Ashleigh is already doing a lot more than Anthony did at her age. Because Anthony started losing his abilities, he lost his sucking reflex early on and stopped smiling.
“I am so happy we have got Ashleigh but the sadness of losing Anthony will never go away.
“I feel upset that we don’t have them both.
“It is still very hard without Anthony and I think about him all the time.
“Tony and I have conversations about Ashleigh and talk about what she’ll be like when she’s older. We could never have those conversations about Anthony as we knew he wouldn’t be here.
“We appreciate every single day we have with Ashleigh and will never take her for granted. Every moment is so precious.
“We can look at Ashleigh’s future with hope and optimism.
“We have lots of photos of Anthony in our home but there is one large one which Ashleigh really seems to focus on and she smiles whenever we walk past it.
“When she is older, we will tell her all about her brother who will always be in our hearts.”