MONDAY, MAY 3, 2021
After a tough 2020, we are pleased to have restarted the majority of our services to continue to provide face-to-face support to our families within the community.
The NurtureGroup Play and Support Groups provide a safe environment for families who have experienced the birth of a baby born premature or sick to meet with other families who have been through a similar experience and continue to receive support from Miracle Babies. Allied Health Professionals may also attend NurtureGroups as guests to provide additional support and advice to families. These may include Occupational Therapists, Health Nurses, Speech Pathologists, Physiotherapists and other specialised health professionals.
Register here: NurtureGroup - Miracle Babies
One winner will be selected at random every 3 months (up until 30th April 2022). *Terms & Conditions apply.
Lucky winner of the 4moms® mamaRoo®4 infant seat last year, and NurtureGroup attendee, Kiara, shares her story of how she welcomed her darling daughter Amelia into the world at 25+4 weeks and spent 120 days in the NICU.
“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.”
Kiara had started to attend our NurtureGroups when COVID-19 restrictions hit in 2020 and our face-to-face support groups had to be moved online. With services restarting across the country, Kiara now continues to attend her local NurtureGroup to stay connected to other families who have been through a similar experience.
“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.”
Regional and Rural families are also able to access online support through NurtureGroup Online.
“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.”