As told by mum, Maddie
My husband and I were thrilled to be expecting our first baby one year into our marriage. While my pregnancy started with severe sickness that improved by the second trimester, I became increasingly concerned when I didn’t feel my baby move. At 28 weeks, I insisted on another scan. My husband was away playing rugby, so I went alone, hoping for reassurance. Instead, the radiographer told me to contact my midwife immediately and go to the hospital.
The scan revealed a perforation in our baby’s bowel, and we were referred to Christchurch fetal medicine for further evaluation. During the appointment, the doctor asked if we had a family history of cystic fibrosis. We had never heard of it before but agreed to a blood test just in case. The next day, the doctor called and said, “I’m so sorry, but there’s a 98% chance your baby has cystic fibrosis.” In that moment, our world changed. The diagnosis felt overwhelming, and everything became a blur as we tried to process what it meant for our baby and our family.
We moved to Christchurch and stayed at Ronald McDonald House as we awaited her arrival. At 35 weeks, I was admitted with pre-eclampsia, and days later, Maya was born via emergency C-section. The room was filled with 18 medical staff, ready to care for her immediately.
As soon as she was delivered, Maya was taken to NICU, and my husband went with her. I was taken to recovery, lying there wondering how my baby was doing. I didn’t get to meet her until the following day, when I was wheeled down to NICU to see her in her incubator, seeing our tiny baby surrounded by medical equipment, with breathing tubes and monitors attached, was deeply confronting and terrifying but we tried our best to stay positive for her.
She underwent a three-hour operation for a meconium ileus, where part of her bowel was removed, and a stoma was placed.
Waiting while our newborn was in surgery was excruciating, and I was a mess when it was finally over. Maya returned to NICU and started her recovery, but four weeks later, she needed a second surgery to reverse the stoma. This was another challenging day, but thankfully, the surgery went well, and Maya spent the following 10 days recovering. After this, we were finally transferred to the Dunedin NICU.
It was such a relief to be closer to home after so long in Christchurch, but the journey was far from over.
In Dunedin, we spent 16 more days helping Maya recover from smaller issues like infections, viruses, and low haemoglobin while also learning how to care for a baby with special needs. We were taught how to administer her medications, manage her feeds, and handle her specific care requirements. After 56 days in the hospital, we were finally able to take Maya home.
It was daunting to leave the constant support of the nurses, but we were ready to face the challenges ahead and give Maya the best life possible. While cystic fibrosis is a lifelong condition with no cure, Maya is thriving, and we are endlessly grateful to the doctors and nurses who saved her life. NICU was one of the hardest places to be, but it gave us the greatest gift—our baby girl.
Thanks so much for sharing your personal story
We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email info@littlemiraclestrust.org.nz
If you want to help our support of families going through the stress and anxiety of a neonatal journey, you can donate here.
- The Little Miracles Trust provides support to families of premature or sick full-term babies as they make their journey through Neonatal Intensive Care, the transition home, and onwards. We do not receive any Government funding and are entirely reliant on the generosity of individuals, companies and organisations in the form of donations, value-in-kind donations, grants, sponsorship and fundraising events to supplement operating costs and fund our services and initiatives.
- As we are a registered charity (CC56619) with Charities Services New Zealand we will send you an IRD compliant tax receipt – this will happen automatically by return email.