Help baby Chad born with a rare genetic syndrome

Update posted by Tracey Classens On Oct 02, 2018

A busy last few weeks for baby Chad but just wanted to update how amazingly well this little baby is doing! We have been, and are, so blessed to have such wonderful people in our lives and to have the donations and prayers that have got us all this far, and without all the support I am not sure where we would be.

Chad continues to amaze us with his strength and medical breakthroughs. We had an updated CT scan which shows bone has grown in the large gap in the front of the skull, truly amazing and this has impressed his surgeon as well. Since his CT scan looks so good, along with this brain looking awesome, his surgery date is the 3rd December in Johannesburg (Sunninghill hospital) where I will stay with him for a month, and Dad having to come back to Durban after the surgery to continue work. This will be a difficult time I am sure but we have come this far and I know he will recover well! The surgery is to advance the forehead in order to protect his eyes which protrude, make them more even and allow room for his brain to grow, it also involves separating the fused coronal sutures. We have faith in his great surgical team and know he will pull through. In order for the surgery to take place he had to see his Cardiologist to give the go ahead and again, so blessed to have such wonderful news that his VSD completely closed on it's own and he is clear for surgery!

Due to chronic fluid build up in his ears we are due to have grommets Monday 8th October and this will help him hear better. I am always apprehensive with anaesthetic as with Apert syndrome there is always a higher risk of issues with their small airways but I know he will be in good hands.

Apart from all of the surgical interventions he has done so well with his weekly physical therapy sessions, and has much better upper body control and it's quite amazing to see how he adapts with his fused fingers to toys and even holds his bottle to feed himself! He even poops on the loo in his baby throne and is loving eating sweet potato and avo!

It has been a difficult road both physically and emotionally draining and it is only just beginning, we are used to getting some stares already when we take him out but you become immune and life must go on! We have been so blessed with such support that any bad experiences are suppressed. I pray everyday for him to have as much of a normal life with friends, surrounded by a good community where he is accepted for who he is not for the differences in his appearance. We have been referred to a Cape Town surgeon as well who performs a rare procedure which could benefit his breathing next year and await his response, as well as his hand surgery which will take place around 18 months in Durban.

We are just amazed by the overwhelming generosity of friends, family and strangers and Thank You all so much. Even though the words, 'thank you' does not seem enough we are truly truly thankful from the bottom of our hearts and continue to try pay it forward where possible.

I will continue to update Chads journey along the way, all our love. The Classens family.

CT scan at 7 weeks of Chads Skull

CT scan at 7 months with new bone growth

Loving to giggle at his Aunty Candace playing Peek-a-boo

Beautiful healthy happy sweet Chaddy, my heart





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Incredible progress for a wonderful little warrior. God Bless all those that are contributing to his recovery

David Smillie

Update posted by Oct 02

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Update posted by Tracey Classens On Aug 03, 2018

It has been a long overdue, much needed, update from our side. So much has happened the last few months with our baby Chad who is now 6 months old. Thankfully the leg casts came off, a very difficult three weeks with them on, but he now has straighter feet and is a much happier (and lighter) baby! He has to wear regular shoes (preferably made of leather but currently his feet are just too small) to carry on straightening out the feet as he grows. We are very blessed to have Dr Stead and his amazing team assisting us along the way.

Next we prepared to head to Johannesburg to meet Dr Kelly, we again were so blessed with Garrith & Jodi Jamieson from Rescue care sponsoring us flights (Business class! was a first for us all and so very exciting!) to Johannesburg with car hire! We headed off and thankfully Chad was a happy sleeping baby. We arrived in freezing Sandton at Sunninghill hospital in the nick of time and met with Dr Kelly, craniosynostosis Plastic surgeon expert and Dr Retief (Neurosurgeon), we were welcomed openly and had realistic discussions about what needs to be done. It was decided he will need a head CT in September and the operation will take place most likely at the end of October. This will be to separate the coronal sutures of the skull and a forehead remodel to allow more room for his brain to grow as he grows. So this is a biggy and Chad will need to be in Johannesburg for at least a month during this time.

On returning we had follow up hearing tests with Dr Kara Hoffman and her team, as well as with Dr Parbhoo (Ophthalmologist). It was then decided he has lazy left eye and so needs patching 4 hours day on the good eye (we are working on this one slowly but surely!). It was also decided by his ENT Dr Williams, he will most likely be needing grommets due to fluid build up in his middle ears which is affecting his hearing.

We also have started physical therapy once a week in order to strengthen his upper body and work with various issues, and so far have been blessed with an amazing team once again to handle this. He also sees Dr Matkovich for Chiropractic support when needed.

Everyday is a challenge to not overthink the future for Chad and the struggles ahead, but we just take a day at a time as always. We have had interesting questions and i encourage people to ask as many as they can, yes he can see, yes he communicates, yes he will crawl, walk (even run) one day, yes he can even suck his thumb :)

He is happy as can be and loves to laugh, babble, grab his toys, attempt to roll and really melts your heart at how hard he works to grow into a strong healthy boy.

We are very blessed to have such amazing support from family, friends, professionals and strangers far and wide! So thank you for helping us get this far!

Yay leg casts are off! Kick kick kick, play play play :)

Ready to board the plane!

Ready for take off!


In Johannesburg, off to meet Dr Kelly and the surgical team

Comfy in the air B&B in Johannesburg, a bed to myself! 1 degree Celsius!! Brr

Back home enjoying solids, yum!

Eye patch for the lazy eye, after our long ophthalmology appointment.

Working hard in physical therapy!

Happy baby :)






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Update posted by Tracey Classens On May 15, 2018

We have been so overwhelmed with such amazing support for Chad! So very blessed to have his story shared far and wide, and receive so much love, support, prayers and donations allowing us to push on forward. So thank you to everyone, words cannot describe!!

Last week we had the dreaded leg casts put on, as Chad was born with very high arched turned in feet, he needs leg casts for 3 weeks in order to straighten them out and stretch the ligaments. He smiled through it all until he realised he couldn't kick his legs (his favourite past time!) and then many meltdowns later and a sleepless night for us all, he adjusted.

For my first mothers day I was gifted with the most beautiful laugh from this boy as my amazing husband said "Happy Mothers day!". So blessed and well more tears later, my heart melts for this precious boy.

We are off to Johannesburg end of the month as the leg casts are removed to see a Craniofacial Surgeon and we are praying the 6 hour drive (thank you to my Dad for lending us your car!) will be worth it! We have forwarded all the scans and appointments up to date to the specialist and hope he can help us - so far this includes, ENT, Ophthalmologist, Paediatrician (amazing Dr Roos - who will be helping us manage the specialist visits), Cardiologist, Craniofacial team in Durban, Geneticist, Audiologist, and Orthopaedic surgeon.

It is only the beginning of our journey but already we have been blessed in so many other ways, it definitely takes a small town rather than a village to raise this boy but he is such a strength which keeps us going and we really are so grateful for all the support!


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Thank you Marinda & Coopie for all our support!! Will have to come visit soon Xx Lots of love

Tracey Classens

Update posted by May 15

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Our beautiful Protector and Defender, baby Chad, you are so brave! Your fighting spirit is such an example for us. Thank you for being such an awesome example of what true courage, endurance, hope and love truly mean and looks like. You are not even a whole 4 months old, but you have taught me SO MUCH! You truly are a real little Angel. Ek lief jou SO BAAAAAAIE my seunskind. God Bless you now and always. Tracey and Brad, you guys are awesome parents! Baie liefde Milla, Mams en Coopie xxxxxxxxxx

Marinda Cilliers

Update posted by May 15

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Thank you Sam !! Xx

Tracey Classens

Update posted by May 15

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Little soldier is doing so well lots of loves from our side. ❤

Samantha Loos

Update posted by May 15

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Megan Jones

Backed with $350.00 On Nov 13, 2018

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Darryl Classens

Backed with $200.00 On Oct 31, 2018

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Good luck with Chads December procedure.

Elizabeth Denissen

Backed with $50.00 On Oct 16, 2018

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Anonymous

Backed On Oct 03, 2018 Amount Hidden

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Charlotte Lennox

Backed with $15.00 On Oct 03, 2018

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Bless this little soldier x

Jo-Anne & Brandon Kruger

Backed with $100.00 On Oct 03, 2018

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Having a father like Bradley, he has already won.

Benjamin Stewart

Backed with $100.00 On Oct 02, 2018

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Keep up the good fight, little Chad.

Nicole Graham

Backed with $30.00 On Oct 02, 2018

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As promised for my beautiful Chad Lotsa Love Oupa Darryl xxxx

Darryl Classens

Backed with $200.00 On Sep 28, 2018

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Debbie Muller

Backed with $32.00 On Sep 04, 2018

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Tracey Classens

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Brad Classens

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