Seventeen month old Nora was born nine weeks early and weighed just one pound and two ounces.
She spent 10 weeks in Neonatal Intensive Care and is now under the care of eight different teams as an outpatient at the Royal Hospital for Children, Glasgow for a combination of challenges linked to her Primordial Dwarfism.
Primordial Dwarfism is a rare condition that causes growth delays in a child’s early stages of development.
Despite being faced with several challenges from her condition, Nora has never stopped smiling.
Nora’s parents, Amy Mcanish (36) and Ruaraidh Mackay (33), wanted to share their story to highlight the support that they have received for Nora’s medical care and one major part of their journey, her feeding tube.
Amy explained that Nora’s feeding tube journey started from the moment that she was born.
“We got to feed our daughter before we held her. Nora was so small when she was born meaning that she had to be fitted with a nasogastric (NG) tube through her mouth initially then through her nose. Ruaraidh and I were trained on how to feed her from quite early on and she was initially fed via a syringe with my breast milk throughout our NICU and special care journey.
“Nora was fed every two hours for a long time, then moved onto three hourly feeds of bolus feeding, where milk is sent through a feeding tube using a catheter syringe.
“We had to get training to fit the NG tube, which was a bit stressful, but we got good at it quickly because Nora’s tube fell out often. We developed a good technique to make it stay put. We were allowed home from hospital once trained, so were keen to learn and develop our own routine,” she said.
When the family got home Nora was still being fed expressed milk every three hours. Nora also suffers from bad reflux and needed be kept upright an hour after she was fed. Amy and Ruaraidh would do shifts of who was feeding her and staying awake with her through the night.
Amy explained how the support kept them going.
“I look back and wonder how we did it. Ruaridh is very supportive, and the hospital was great. I had good support from the breast feeding team in NICU to help me express, and they loaned me a hospital grade breast pump. They made it as easy as possible. I had an oversupply so donated some of the milk to Milk Bank Scotland,” she said.
Nora is currently around seven pounds in weight and now has a NJ tube. However, a recent development in how she is being fed is giving the family some relief.
“The milk from the tube goes directly into her small intestines, and we now have a pump which has changed our lives for the better. Having the pump means we don’t need to get up through the night as it feeds her automatically, so we have discovered she’s quite a good sleeper.
“The NG is great for Nora as it means she’s not losing milk and she’s much more comfortable. Since being on the pump she has developed greatly, and we are able to do more with her because we don’t need to keep her upright for an hour after she is fed. She has even started eating oral foods too and tries some porridge in the morning.
“That being said, as Nora has gotten a bit older, she has become very handsy, meaning she gives us plenty visits to the hospital to get her NGI tube re-fitted after pulling it out,” she said.
Next steps for Nora involve looking at a PEG-J. Amy anticipates this will involve some lengthy discussion with her medical team who will help guide them through all options and scenarios because Nora is so petite.
Amy explained that getting into a routine has been what has kept them going.
“Nora is a complex wee thing but is such a happy wee girl. For any parents just starting their feeding tube journey, it’s not as bad as you think. At the time you think ‘this is just life now’ but you just need to find your routine and life gets easier,” she said.
Nora is currently under eight different teams at the Royal Hospital for Children, Glasgow including Dietitians, Respiratory, Gastrostomy, Ophthalmology, Audiology due to Nora currently having a bone conducting hearing aid, Orthopaedics due to Nora’s hip dysplasia, Renal because she has high blood pressure, General Paediatrician, Physiotherapists, and Occupational Therapists.
Mandy Meechan, Royal Hospital for Children, Glasgow Chief Nurse, Paediatrics explained why having multidisciplinary teams like this are important.
“We’re delighted to see that Nora and her family are doing well and have found their ground in managing Nora’s condition. While rare conditions are just that, rare, collectively there are many children out there who have them. In many cases, there won’t be a lot of information out there on a rare condition and parents need support from various experts to help guide them in each stage of their child’s medical progression.
Generally, children with rare conditions, such as Nora, will require multiple forms of care and so we are glad that we’re able to offer a multidisciplinary approach here at the hospital, especially with her feeding,” she said.
A charity called ‘Walking with Giants’ has also helped support the family on their journey, putting them in touch with specialists in Nora’s condition from Edinburgh and America. Her teams at the Royal Hospital for Children, Glasgow have also linked in with these specialists to help understand her conditions further.
