REAL LIFE: “My 7yo daughter had four surgeries in her first four months of life”

By Nicole Zois

Nothing prepares you for motherhood. It is a mix of emotions all rolled into one – amazing, heartbreaking, exhausting with a flood of unconditional love that is so special.

I have four beautiful children – 14yo George, 11yo Jason, 10yo Adelyn and 7yo Breana.

When I was 12 weeks pregnant with Breana I was told by doctors that something was not quite right. Breana had a very large nuchal fold and an umbilical hernia where her organs were still growing in her umbilical cord. We had a CVS test performed following medical advice. Our results came back negative so we were asked to come back at 14 weeks for another ultrasound as the findings could be indicative of a heart defect.

“I was scared to bond with my baby”

At 14 weeks we discovered Breana was likely to have a Congenital Heart Defect known has Hypoplastic Left Heart Syndrome. The left side of Breana’s heart wasn’t developing properly and was much smaller than the right side. We were very closely monitored throughout the pregnancy and saw a cardiologist throughout as well.

During this time I was an emotional mess. I was scared to bond with my baby, in case something happened. We didn’t discuss much of this with the other kids as they were so young and we didn’t want to scare them or worry them unnecessarily. We just told them that when the baby was born it will most likely need to stay in hospital for a while as the Drs would need to fix its broken heart.

I went into labour at 35 weeks and Breana was born via C-section and was a small 2.6kg. From the minute she was born the Drs and nurses suspected something was wrong. They ran more genetic tests. Breana had a small head, low set ears, an anterior anus, was hypoglycemic [low blood sugar], was cyanotic [blueish in colour] and required breathing assistance.

The results of the test came back two days later that Breana had 22q11.2 deletion (DiGeorge Syndrome). Her first week of life was a week of more diagnosis and lots of specialists. Her heart was more complex than we were expecting, she had a laryngeal web that was affecting her voice, her bottom was in the wrong place and she couldn’t feed orally so had a feeding tube.

Breana spent her first four months in NICU, with the first two and a half months on CPAP or hi-flow. During this time Breana underwent four major surgeries, countless tests, and six general anesthetics. She was also diagnosed with GORD (Gastro-oesophegeal reflux disease), spinal abnormalities, Global Development Delays and was PEG fed through her abdominal wall into her stomach.

“Our whole lives were upside down”

We got up each morning, made the trek into the hospital, spent the day at Breana’s bedside, whilst trying to entertain the kids, then would head home to do it all again the next day. During this time our whole lives were turned upside down. We were running on adrenaline, we were all tired and the kids missed out on so much in that time as every single day was spent at the hospital, including Christmas Day.

At 10 months old, the doctors started to suspect that Breana was having mini seizures. Her EEGs were normal so we were just watching and monitoring. Just after her 1st birthday when was an inpatient, she had three major seizures that required recovery medication. At that stage, after a number of MRIs and EEGs, Breana was diagnosed with epilepsy.

All of her life Breana has struggled with oral secretions. After a multitude of tests and seeing many different specialists and surgeons, no one can really explain why. Breana has tried five different medications as well as Botox injections, all of which only improved things for a short period of time. This is still a big challenge day to day and is exacerbated whenever Breana is unwell.

“Breana is now completely oxygen dependent”

Breana had open heart surgery in November 2015. Of course, in true Breana style, there we complications and set backs. Once she finally recovered from the surgery we ended up being discharged on nightly oxygen. Unfortunately Breana is still on oxygen, except she is now completely oxygen dependent. No one can explain why, but she simply cannot manage without it.

At 19 months of age, Breana had anoplasty surgery to correct her bottom. We had to keep delaying this surgery as she simply wasn’t stable enough. We have been dealing with bowel issues pretty much all of Breana’s life, and it is likely to continue forever. It is also likely that she will remain incontinent.

Breana went through a rough stage of gasping for air. It was believed she was having larryngo spasms. Turns out her epiglottis was split and half of it was flopping over her airway causing her to be unable to breath. This required two surgeries to fix. Unfortunately it didn’t help with her oxygen saturations, but has stopped the gasping. One negative aspect of these surgeries, is now Breana will never be safe to feed orally. This was a hard time as feeding orally was always a goal we had.

While Breanna is non-verbal she’s doing really well with key word signs and is able to communicate quite clearly. She has been independently walking for around 12 months now and can walk for about 25m before fatiguing. This milestone was one we never thought would happen! Breana just stood up one day and took off! We were so excited and the kids were so happy that Breana could finally follow them around and play more games with them.

We came across Supertee – a practical medical garment for children – whilst we were in hospital for what turned out to be a four-month stint. Supertee was created by a dad – Jason Sotiris – who wanted to help other children in hospital after feeling helpless while his own daughter battled cancer and was in hospital for long periods at a time.

Breana was presented with her Supertee halfway through her hospital admission, and that day changed our hospital lives forever! No more spending admissions in a nappy only. Finally Breana could be dressed in hospital, yet still have all the required access for Cardiac monitoring, IV lines and feeding tubes.

We never leave home without our Supertee, we even have a spare one in the car! Supertee means Breana can have the dignity she deserves whilst she is at her sickest and in the most need of support.

You can help others like Breana by donating at www.supertee.org.au