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Our precious Aiden was 7 weeks premature at birth, and shortly after was diagnosed with VACTERL-Association. His association with VACTERL is vertebral abnormalities (T-vertebra – his one vertebra is a “butterfly” shaped in the centre and the other is merged and almost flattened), Renal (kidney – he was born with cysts on his right kidney) and cardiac (heart- all of the “communication” between the heart columns were open at birth) defect.
On this road to recovery we have been referred to all the best doctors and specialists. He is currently at a Specialist Pediatric Cardiologist, Dr. Sinyangwe for his heart defects. We have gone for the internal scan after he turned 1. The communications between the columns have become smaller, but not closed completely yet, the left side of his heart is still enlarged, but with no medical assistance thus far, his heart has been restoring itself.
Regarding his kidney scans on the last visit to the Specialist Paediatric Nephrologist, Dr. Gottlich, the cysts on his kidney have become significantly less, also with no medical assistance, but his left kidney is not located in the correct anatomical position.
His vertebral abnormality is still unchecked, as we will only be sure what the affect will be on him by the time he reaches puberty.
He was also born with a small sinus canal, so any minor cold or flu normally goes over to a respiratory infection.
After all the ongoing tests we also noticed that he was not growing at the preferred rate, according to the growth chart standards. We were working closely with Sister Heather Jepson, when we just ensured he reaches his developing milestones. We were referred to an Endocrinologist, Dr. Segal, who tested his growth hormone found the response to be 6.18ug/l (normal > 20ug/l). Which is not up to standard.
He is not growing, he is almost 2 years old, but still wears 3-6month old clothing... he needs to start with the Growth Hormone treatment ASAP.
The blood tests for the growth hormone cost R5128.79 at Ampath, and this account is still due. We simply do not have the funds at this time.
Here is more information on VACTERL Association:
VACTERL association is a non-random association of birth defects that affects multiple parts of the body. The term VACTERL is an acronym with each letter representing the first letter of one of the more common findings seen in affected individuals: (V) = vertebral abnormalities; (A) = anal atresia; (C) = cardiac (heart) defects; (T) = tracheal anomalies including tracheoesophageal (TE) fistula; (E) = esophageal atresia; (R) = renal (kidney) and radial (thumb side of hand) abnormalities; and (L) = other limb abnormalities. Other features may include (less frequently) growth deficiencies and failure to thrive; facial asymmetry (hemifacial microsomia); external ear malformations; intestinal malrotation; and genital anomalies. Intelligence is usually normal.
The exact cause of VACTERL association is unknown; most cases occur randomly, for no apparent reason. In rare cases, VACTERL association has occurred in more than one family member.
Treatment depends on the symptoms, and may include surgery to repair the birth defects, followed by long-term managment.
The Doctor's recommendation:
"I would like to motivate for Aiden to start Growth hormone replacement with Norditropin Nordilet 5mg- at a dose of 4 clicks daily. At this dose each pen will last 18 days.
Each pen would more or less come to the amount of R2000 , amount can increase according to dosage.
The family has medical aid, but there are all kinds of issues from the medical aid and they need to start treatment asap "
Please help us help Aiden.
We would appreciate any donation; and your prayers are also appreciated.
Cornelia & Martin De Bruyn
- Juanita Oosthuizen
- Campaign Supporter
Update from Aiden’s MomUpdate posted by Juanita Oosthuizen at 03:41 pm
Hi Everyone,Aiden has been getting his injections daily, but there has been no clear indication of it working. Aiden remains at 7,7kg - the same as before he started with the treatment. He might have grown slightly in length, but it is very subtle. Currently we are waiting for confirmation. . . . .
Aiden’s First Treatment UpdateUpdate posted by Juanita Oosthuizen at 03:19 am
The treatment educator explained the procedure to us, it is quite simple as it is the same as an insulin pen. The needle size is 4mm and it is the smallest that exist. He will get 4 clicks of the pen daily, administered once a day. Not supposed to have. . . . .
A Message from Aiden’s MommyUpdate posted by Juanita Oosthuizen at 02:59 pm
Sorry for being so quiet, trying to get everything sorted with the medical aid. This is Aiden's growth chart, indicating why he urgently needs this treatment.Got feedback from the medical aid regarding the registration for his PMB for the growth hormone treatment, it is definitely declined as it is not