Family of the Moment – Rigby Family

8d5fb2fe-d1d4-4c38-b24a-2d82393ee139Family Name: 
Rigby Family

Premmie’s Name:

Gestation Born:
23 weeks & 5 days.

How long were they in hospital for?:
112 days

How many of your children were born premature?: Two, Flynn was a twin. Jack passed away at 10 days of age.

Is there history of prematurity in your family?:

How did you cope with the world of prematurity?: We were in shock for the first few weeks and every morning I would wake and not really believe it had happened. Our boys were both very sick and not given a great chance of survival, only about 10-15%. As the days turned to the first week though we began to feel more hopeful until Jack took a turn for the worse and passed away at 10 days old. It was so hard grieving the loss of him and still trying to hang onto the hope of taking Flynn home one day. We were told by several Doctors not to have Jack’s funeral after he died but to wait a week or so as they didn’t expect Flynn to make it and thought it would be best for them to have their funeral together. We couldn’t do that though as it seemed to be giving in and losing hope. Having two sick babies is double stress I guess you could say and was very difficult but at least we still had Flynn to cling to. We just tried to focus on the positive and hold on to the hope that he would be ok and get through each day.

How did you feel when you first saw your children after they were born?: Seeing the boys were so scary, I had never seen any babies anywhere near as small as they were or as bruised and skinny. It was heartbreaking to see them and know we couldn’t stop this from happening.

Has there been any lasting complications due to your child’s prematurity? If so, how have you coped as a family?: Flynn stayed in hospital until his due date, the first 9 weeks in Townsville Hospital and the next 7 in Cairns where we live. He came home breathing on his own and bottle feeding. He needed strabismus surgery on his eyes at 18 months old but apart from that grew physically stronger and stayed healthy for the first few years. He met his gross motor milestones a little late but could crawl, walk, run, and finger feed by the age of 2. His fine motor skills were severely delayed though and by the age of 4 he was not speaking, toileting, spoon feeding, or drawing/tracing/writing/cutting at all. He was then diagnosed with Autism and received a lot of therapies/ treatments such as speech therapy, OT, Physio, ABA to try to help. He made some progress but was still totally non-verbal and needed full-time support within all educational settings by the age of 9. We then took Flynn to China for stem cell treatment and half-way through his treatment he started to speak. His progress upon finishing the treatment made an amazing leap. He began to write, speak in sentences, interact with his peers, read and improve his gross motor skills dramatically. He has since been to Thailand for another round of stem cell treatment with again great improvements in the areas of speech, social interaction, academic ability and motor skills.

How do you feel now about prematurity and how do you support other parents?: It is my greatest wish that no other family would have to face having their babies prematurely and have to watch them struggle to survive and then face the life-long difficulties that prematurity can bring and I try to support others by sharing our story and letting others know that in time progress can be made.

Share with us your favourite quote (if you have one) that inspires you as a premmie parents?: Things are bad, but they could be worse so see how it goes and get through one day at a time!

Please let us know one important tip you learnt from your time in NICU/SCN ie: take lots of photos: Ask lots of questions and be as involved as you can. Spend as much time as you can with your baby/babies reading, singing, kangaroo cuddling. This is all very important bonding time and even though it is scary try to cherish those memories. In the end you are the parent and the more hands on you can be in the hospital the easier it will be when you take you little one home.

What advice would you like to share with our community from your own personal experience of giving birth to a premature baby: This experience of parenting a premature baby is not what you expected or wished for but in the end you have to make the most of it and still look for the positives.

More Info: Flynn has a number of times travelled overseas for stem cell transfers. He has his own Facebook page for those who may be interested you can see more information on his stem cell transfers here.

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