Supporting our miracle community during the ever-evolving COVID-19 pandemic

Miracle Babies Foundation is continuing to support families with premature or sick babies who are feeling isolated due to the ongoing pandemic. Families like Miracle Mum Kiara, who welcomed her darling daughter Amelia into the world at 25+4 weeks. Baby Amelia spent 120 days in the NICU and finally came home in January this year.

“Miracle Babies was a great support during our NICU stay. It is absolutely amazing to have a platform to go and read other families' stories. You soon realise that you are not alone in this very scary and unknown world and there are so many other incredible families going through the same thing,” said Kiara.

Kiara had started to attend our NurtureGroups when COVID-19 restrictions hit and our face-to-face support groups had to be moved online.

“Unfortunately, I only got to attend one NutureGroup session before COVID-19 restrictions were put in place, but the one I attended was fantastic! It is great to be able to go to a place and feel safe and secure with other mums who have been through the same thing and can relate on a totally different level.”

To help other families traveling a similar journey, Kiara is sharing her story of welcoming Amelia into the world earlier than planned:

“Our sweet girl Amelia was born at 25+4 weeks gestation weighing a tiny 610g due to severe preeclampsia. I was admitted to hospital due to high blood pressure and severe swelling the week before I gave birth. Every day that I kept Amelia in was a miracle, until eventually an ultrasound showed absent flows from my placenta and I was rushed for an emergency c section less than an hour later.

Amelia spent 120 days in the NICU, both at Nepean Hospital & GRACE at Westmead Children’s Hospital. We stayed at GRACE for 91 of those days, where she underwent four surgeries and had many complications. On day 11 of life she had a penrose drain inserted for NEC (necrotizing enterocolitis). On day 12 she was taken to surgery where it was discovered she had a variation of NEC and had four small holes near where her intestines met. She had 7cm of bowel removed and had stomas created.

From birth she had a significant PDA (Patent ductus arteriosus), which unfortunately did not close with conservative treatment. She had her PDA surgically closed at three weeks old.  

After Amelia’s stoma surgery her stomas had started to prolapse. In December after a couple of months of pooing into an ileostomy bag, one of her prolapsed stomas had started to lose blood flow and she was rushed into an emergency surgery. She was less than 1.5kg at the time and her stoma reversal surgery was not yet due, as they wanted her to be around 3kg. We were not sure if she would have new stomas created or if her reversal surgery would be able to be done. We were very lucky to hear her surgeon was able to do her reversal surgery.

Amelia also had stage three ROP(Retinopathy of prematurity) in both eyes, which needed two lots of injections in either eye and then eventually laser surgery. We had some complication with haemorrhaging in her right eye post laser, which took place in January, but we finally have the all clear that the blood is 98% gone and our appointments have moved to six-weekly. She is expected to get glasses by the end of the year.

Besides her NEC, PDA and ROP being her major complications during her NICU stay, Amelia had various other complications such as sepsis, multiple infections, seizures, a grade two brain bleed, two broken bones, anaemia requiring around 15 blood transfusions, being ventilated for a prolonged period, a collapsed lung and chronic lung disease. She is also a carrier for Fabrys Disease and has a chromosome duplication.

She came home on low flow oxygen when we were discharged in January, and she came off oxygen late April. She has ongoing physiotherapy appointments every fortnight as she is being monitored for hemiplegia cerebral palsy. Her latest surgery was in June when she needed to have a massive incisional hernia repaired.

Despite everything she has been through in the first year of her life, she is such a character and one of the happiest cheekiest bubbas I’ve ever known. We will be celebrating her first birthday in September!”

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Miracle Babies is aware of the uncertainty and heightened anxiety among families right across Australia during the pandemic. For families like Kiara’s, impacted by restrictions and unable to access face-to-face services, we are offering access to virtual support groups through NurtureTime Online and NurtureGroup Online (for regional and rural families).

 

Kiara was also one of the lucky winners of the 4moms® mamaRoo®4 infant seat, for attending our NurtureGroups.

“I was so shocked and happy when I received the phone call saying we had won the mamaRoo! Amelia absolutely loves spending time in it. It has been a lifesaver when I want to get something done around the house.”

As we have had to temporarily suspend many NurtureGroup services due to COVID-19 restrictions, all new sign-ups for our NurtureTime Online and NurtureGroup Online support services will also be entered into the draw to win a 4moms® mamaRoo®4 infant seat, thanks to TABC (The Amazing Baby Company).

One winner will be selected at random every 3 months (up until 14th October 2020). *Terms & Conditions apply.

Register here:

NurtureTime Online

NurtureGroup Online

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Author

Miracle Babies Foundation

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