Help Heart Warrior Baby Isabella Grace Atkins

Sweet Baby Isabella Grace was diagnosed with Ebstein Anomaly during a routine pregnancy ultrasound.

 

She will require ongoing heart surgeries throughout her childhood, adolescence and into adulthood.

 

The diagnosis through the ultrasound rocked my brother Doug and his partner Sammie's world. All of the excitement and joy of welcoming a new baby to the family was suddenly replaced with so much fear and uncertainty. Despite the devastating news both parents knew they wanted to give their child the opportunity to fight for life.

 

This meant many hospital visits during pregnancy and a birth plan that included the likelihood of being transferred from The Royal Adelaide Hospital to The Royal Children’s Hospital in Melbourne for heart surgery. Sadly, this all proved true when beautiful Isabella was born 3 weeks premature on the 13th September 2021.

 

Isabella was to be rushed off to ICU. Her fight to survive began with a thirteen minute resuscitation and once stabilised, she had to be connected to multiple devices to monitor and assist her to keep fighting for life.

 

Over the next 4 days Isabella continued her fight until she was strong enough to be airlifted to Melbourne.

 

Once she arrived in Melbourne she received the best care possible from the amazing staff at The Royal Children's Hospital including dedicated around the clock care. She needed to be kept asleep while machines and drips kept her tiny body alive. All we could do was hope for the best and watch over her as it wasn't possible for anyone to hold her.

 

On the 23rd September just as she was starting to look strong enough to undertake the surgery she so desperately needed, we were told she had an infection. This infection was a double edged sword - she couldn't proceed with her heart surgery whilst she had the infection or she wouldn't make it, but if we waited for the heart surgery she may suffer complete liver failure. Despite everyone's best efforts it was clear Isabella was in pain, every part of her little body was swollen with fluids and her tummy was totally distended.

 

On the 25th September I was given a special exemption to come in and meet my niece as her outcome was looking more and more unclear. Seeing her was the most confronting thing I have ever experienced. She was such a little poppet and needed so many machines just to continue her fight, all I could do was break down and cry. She was put on antibiotics and given morphine to help keep her as pain free as possible.

 

Doug and Sammie struggled desperately with the decision of whether Isabella should be supported to continue her fight. Seeing their baby daughter in discomfort and not knowing if Isabella’s fight against the infection was possible given the real possibility of liver failure was the darkest days for them. Neither wanted to leave her side so the majority of the next few days were spent bedside.

 

On the 26th September they received the news that she had beaten the infection and they were going ahead with the surgery the very next day at 8am. Neither parent was able to sleep and they spent the wee hours of the morning just being with their beautiful daughter. Gentle touches and words of encouragement was all they could do. The rest was to be up to Isabella and the amazing surgery team who were going to attempt to save her delicate life.

 

It was with baited breathe our whole family waited 9 hours for news on how the surgery went. We were all ecstatic to hear the surgery was a success. The surgeons had been able to repair several arteries and valves. One artery was beyond repair and needed to be replaced with a cow’s artery. Her chest needed to remain open for a couple of days whilst they monitored her progress in case they needed to urgently get back in. Although Doug & Sammie couldn't see their daughter, they waited at the hospital hoping they could see her little face at least once that night.

 

It was just before 10pm they got the devastating news, Isabella had a bleed and had stopped breathing for 15 minutes. She was put on an ecmo machine to oxygenate her blood and was thankfully revived. She needed to remain on the ecmo machine for the coming days while they monitored her. Seeing their baby the next day connected to even more machines and struggling felt bittersweet. She had overcome yet another hurdle in surviving her surgery but seeing her listless body felt almost more than they could bare.

 

Isabella the Heart Warrior continued her fight over the coming days and was able to be taken of the Ecmo machine and survive by herself. This was a huge milestone! However the day brought bad news in that Doug and Sammie had been exposed to Covid and needed to quarantine immediately and be tested. Luckily they had not seen Isabella after their exposure and she tested negative. They however tested positive and needed to be transferred from Ronald McDonald House to Hotel Quarantine and begin their isolation and their own journey fighting Covid.

 

Being separated from Isabella has been very hard on both parents as they count down the days until they can be reunited and hold their daughter. The Hospital does a zoom call every afternoon so they can see their baby girl and hear about how she is going, even so it’s been very hard.

 

Both Doug and Sammie have been affected by Covid with symptoms, some days being mild and other days more severe. They’ve experienced the whole spectrum of symptoms including loss of sense of smell and taste, fever, aches and pains, horrible headaches and nose bleeds. Along with just feeling trapped, sad, stressed and desperately wanting to finally hold and comfort their baby daughter.

 

We hope that by the time the parents test negative to Covid that Isabella will be ready for the next leg of her journey and will be strong enough to be airlifted back to Adelaide hospital for her care to continue closer to the Family home in the country town, Meningie.

 

Isabella will have many health appointments, surgeries and costs associated with providing her the best life possible so it is my hope we can raise funds to alleviate some of the stress for the family ongoing. The journey ahead will have many bumps.

 

Doug & Sammie would like to take this opportunity to thank the Di Felice Family and myself for the assistance already provided to them.

 

If you are in a position to help, I kindly encourage you to make even a small contribution or please share this Go Fund Me with friends and family in case they would like to make a contribution.

 

With love and gratitude,

Jeanie Atkins