Danyul du Toit – Born 18 June 2011
Our son Danyul du Toit was born June 18th 2011 , unknowingly that he has a sequence called Pierre Robin Sequence.
When my wife gave birth i was absolutely shocked, spent another 5 minutes with my wife in hospital before leaving silently. Didn’t take any pictures just left and went home, shocked at what i saw. he had no jaw and he was so small! He was in all aspects different.
I arrived at home, it is still dusk. Climbed into bed trying to catch up the 24hrs i haven’t slept. But to avail my mind was spinning trying to figure how he could be so different, what went wrong what did we do wrong, was it something we did!
Unable to sleep, i phoned my wife up asking her if she saw him, she said no. Asked her to insist on seeing him. About an half an hour later she phones me devastated.
We asked the doctor if there is anything wrong with our child because something is not looking right and he is unable to drink from her.
They took him away for examination, 20 minutes later the pediatrician is back with the news… our son has a syndrome called Pierre Robin Syndrome (correctly know as a sequence) that’s why he has the short almost naked to the eye jaw. We were devastated crying uncontrollably. We were left alone with no further explanation.
We went outside shocked uncertain of the future not knowing how to control our emotions or the way to go forward. After a few cigarettes and few coffees starting to calm down and starting to think realistically a nurse comes through to door where we were sitting and broke more news, besides of him having PRS he has a cleft palate.
DEVASTATED, ABSOLUTELY DEVASTATED even more as before how our son could be so deformed!
Did the universe conspire against us!!
No comfort from the hospital no explanation nor any way to go forward. They left us all alone in the cold with no comfort at all, with even more questions and uncertainty than ever before.
We were absolutely devastated beyond any explanation.
With the support of very good friends, of us that arrived at the hospital we gained control over our emotions they encouraged us to look in the better and not the worse, after all they have a son that was born with a deformaty and they overcame all obstacles thrown in their path and they are going strong living for the better. we are inspired by them.
My parents were both so supportive though neither of us understood what was happening and why but they kept our chins up in the darkest moments.
My wife booked her out of hospital the same day she gave birth we headed for home with one mission and one mission only, to do intense research on PRS, to gain as much knowledge as possible the cause, what it really is, what we can do to help our little boy.
As soon as we arrived at home we got on the internet and started doing intense research on PRS, we spent hours doing research late into the night and by that time being awake for almost 37 hours.
The next morning after just a few hours of sleep and still exhausted we went back to the hospital, the nurses and doctors were astonished by the fact we knew more about PRS than they do! I am educating them on Pierre Robin Sequence! sharing information with them they did not know.
After all, its not the end of the world, it’s the beginning of the a beautiful love story between a son and his parents and the undivided never ending love we have for him.
It’s a good feeling knowing more about PRS in less than a day than the nurses and doctors that is supposed to know all that, but it is also scary to know that they are the caretakers when we are sick and they can’t give us answers and if they don’t have any answers we are left in the cold.
Thanks to the World Wide Web!
What is Pierre Robin?
Pierre Robin is not a syndrome or a disease. It is usually referred to as Pierre Robin Sequence, although it is also known as “Pierre Robin Malformation Sequence”, “Robin Anomalad”, and “Cleft Palate, Micrognathia and Glossoptosis.”
It is the name given to the following birth defects if they appear together:
• small lower jaw (micrognathia)
• a tongue which tends to ball up at the back of the mouth and fall back towards the throat (glossoptosis)
• breathing problems
• horsehoe-shaped cleft palate may or may not be present
Why did this happen?
Doctors do not know exactly why Pierre Robin occurs. They do not believe it is the result of anything the mother did or did not do during pregnancy. If the child only has Pierre Robin, many experts believe that it is the result of the positioning of the foetus in the early weeks of pregnancy.
We could not think our lives without Danyul, he is a true blessing from our heavenly Father.
We love our son to bits. i wish to educate people about the sequence.
If you have PRS it does not mean you are dumb, it does not mean you are “behind” it does not mean you will have the deformity for the rest of your life or will need special care for the rest of your life.
it’s a sequence of events that took place that let up to him having PRS.
you are a perfectly normal human being with an absolutely normal growing up.
It simply means your body did not finish growing by the time you were
born. your body since birth knows that there is a part of you that did
not finish and now its trying to catch up – that's why they call it catch
up growth. but by the hands of a surgeon it can also be fixed.
our little boy is the most loving caring adorable son, he always smile despite. he always has the caring loving look in his eyes. we love him unconditionally, he is our gift from God, our little angel. Thank you Lord for giving us such a wonderful child