I started this foundation to create awareness for the syndrome as my son was born with the condition in October 2008.
The Story of Joshua Parkes and how this foundation came into being.
Joshua was born on the 20th October 2008, the happiest day ever… after delivery the Dr came to us and said there were two problems with Joshua, 1 he had fluid on the lungs and 2 he had a facial deformity. As you can imagine our hearts sank into the pits of our stomach as nothing had shown up on any of the sonar’s, but then the Dr came back to us and said, its ok he just has a slight cleft palate and brought Joshua to us so that we could meet our little man. I was sent into recovery for an hour and Joshua was rushed off to ICU cause of his cleft.
After returning to the ward, I waited about 2 hours to see my child, when they eventually brought him to me to feed, but no matter how much I tried to latch him to the breast, he just wasn’t able to latch. After lots of tears and frustration, the nurses took him back to the ICU and fed him via a tube in the nose.
While in hospital we had numerous Dr’s come and see us regarding the “slight cleft palate” , that turned out to be a complete cleft of the hard and soft palate. We were introduced to the Haberman Feeder.
Joshua was diagnosed with Pierre Robin Sequence two weeks after birth by the plastic surgeon, we went to see regarding his cleft palate, we then went straight to his paediatrician, who had a fat text book open on his desk, and showed us what Pierre Robin Sequence was from the text book. When I asked Joshua’s Dr “what are the implications of PRS”, he shook his head and said “I don’t know”, at that moment I felt so lost. We had no one to turn to for answers or advice. Lots of research on the internet later and still not allot of information was available.
Joshua’s health and weight deteriorated over the next 6 weeks. I could see something was majorly wrong with my child, and all the Dr’s we went to see, all said as long as he is drinking fine, there is NO problem. But I still knew something was wrong as when he breathed his whole chest (diaphragm) would cave in like he was battling for air, he had a permanent blue tone to his skin, he had to sleep on his tummy or on his side, we eventually had him hang over a pillow on his tummy to try and help him get air. He had terrible reflux when he drank, he was on reflux medication, we had to constantly change his milk. He had lost 1.6kg of weight in 6 weeks. Joshua went into respiratory arrest 3 times in 6 weeks.
The 3rd time Joshua went into respiratory arrest, we rushed him off to the emergency room, and we were told that the only thing that can help my child was to give him a tracheostomy, when I asked the Dr how long Joshua would be in hospital, he told me “as long as he has the tracheostomy he will be in hospital”. I had this vision of my child being in hospital for the rest of his life. They admitted him and had him on oxygen, but that really did not help him at all. They had him on a Sats monitor that said his oxygen levels were at 100% but you could see he was still not able to breathe properly and he was still gasping for air.
The following morning, another Dr came to see us and said that there wasn’t much more they could do for Joshua there, so they were transferring us to the Red Cross Children’s Hospital here in Cape Town. Upon arrival at Red Cross, Joshua was admitted for observation, and to our surprise these Dr’s knew what PRS was. We were once again told that Joshua would need to get a tracheostomy, and we signed the consent papers. Joshua was transferred to the ICU for further observation, and we went home, as there wasn’t much more we could do there.
Joshua went into respiratory arrest again during the night and they had to give him and emergency Tracheostomy. The hospital called us at 12h15 that morning to tell us what had been done and that Joshua was in recovery. When we came to see him the following morning, he had tubes all over the place but he lay so peacefully in the bed in the ICU that I had to do a double take just to make sure he was still breathing. His chest was not caving in anymore, he had the normal pinkish tone to his skin, I knew my son was going to be ok. All I could do was cry and thank God for keeping my little man safe. We were later told by the Dr who performed the surgery that it took him 45 min to intubate Joshua as his airways where that tightly closed.
We stayed in hospital for two weeks where we had to learn to change and clean the trachi. Joshua started gaining weight and we were discharged 2 weeks before Christmas. We were also told just before leaving the hospital, that had Joshua not gotten his trachi when he did, he would not have made it.
Joshua had his cleft palate (hard and soft) repaired in July 2009. Joshua still has a very small fistula in his palate, but his Dr is happy not to operate on it.
Joshua had his trachi in for 15 months, and grew from strength to strength. The trachi came out in March 2010 and he had his fistula (hole) closed in September 2011. Joshua’s chin grew out naturally, so we are grateful for not having to have Jaw Distraction (a procedure where they pull the jaw forward over a period of 10 days).
Joshua has had to have all but 5 teeth removed, as his teeth were so brittle from all the medications he was on. He has a few speech issues, but that has been taken care of with speech therapy. Joshua also has to have grommets in his ears at all times, as he doesn’t have the muscle in the ear that regulates the fluid build-up. So as one grommet falls out, it needs to be replaced. We can generally tell when the grommets have fallen out, as his speech tends to go down drastically, so that is a good indication that we need to have his ears checked out.
While we were in hospital, I had a dream that I need to start a charity to help others with PRS. I knew God was giving me the biggest calling of my life. So I doing more research into how to start a NPO, and gathering all the information I could on PRS. I am proud to say that after 4 years of research and planning, the Pierre Robin Sequence Foundation is now a registered NPO, and we help children and families not just in South Africa, but around the world! And I have thank God for blessing my life with my special PRS hero.
I want to create as much awareness for this condition as possible, so that we as parents and the medical fraternity are more informed, thus making the lives of our children more fruitful.