Sunflower Sunday is annual day in which anyone associated with CDH gets together for a day of celebration and reflection, at various locations around Australia. The WA picnic was held in Kings Park. The day was lovely and warm and we had a nice, shady spot.
This year Perth had 9 families attend - 8 of which had surviving CDH children and 1 grieving family. Out of the 8 families, 4 had babies born between July and October last year, including Tahnee. The other CDH children were ages 9, 6 & 4.
Each family took along their own picnic lunch and had time to either catch up again, or meet new families. For us, we had the opportunity to meet 2 new families and share our common experiences. We (re)learnt that the CDH journey is a long and often difficult one, and everyone present had a slightly different pathway they travelled.
We also had a small memorial for the Angel Cherubs (babies/children who had CDH and lost their fight for life). For this memorial, D, a CDH dad had a speech and said:
Welcome everyone to the second Sunflower Sunday. We hope you’re enjoying the day and relaxing with friends, old and new.
The main goal of Sunflower Sunday is to raise awareness of congenital diaphragmatic hernia, or CDH as we know it. It is also a day to reflect on the struggles and triumphs that families face dealing with the condition, and a day to celebrate the friendships that have blossomed through the support provided through the CDH Australia community.
Raising awareness of CDH is important because by educating the wider community we increase our chances of gaining funding for research, which hopefully one day will lead to a cure. Currently there is no known cause or cure for CDH.
For those who don’t know, CDH is a defect of a baby’s diaphragm that allows the abdominal contents to displace into the chest cavity impeding lung development and compromising the baby’s ability to breathe after birth.
A CDH diagnosis is devastating for families because no one can guarantee the outcome. CDH is a serious condition that can be life threatening and cause ongoing complications. Luckily many babies who fight to overcome the condition go on to lead healthy, fulfilling lives.
Today is a dedication to all babies born with CDH, whether in our arms or in our hearts, we remember them for their fighting spirits, their preciousness and their gift of love.
Please join us in [blowing bubbles] to honour our cherubs.
It was special being able to remember these babies, as they are in our hearts every day!
It was great seeing everyone again, making new friends and watching our children play together. We are looking forward to seeing everyone together again at the Annual Conference in October, in Perth, where we are hoping to meet some of the Interstate families.
p.s. we heard over the weekend that CDH baby H from QLD had reherniated for the second time in her short 6months. However, while she was being prepped for surgery she had another scan where the doctors discovered that she HADN'T reherniated at all!! :)
p.p.s CDH baby R from SA (born a week before Tahnee) has had his nasal-gastric tube removed :)
We could update you on many CDH babies and children, however we have chosen to single out the above 2 families as we have mentioned many updates on them in the past and these two events are quite significant for them - we will endeavour to keep you updated on significant events on all cherubs in the future.
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