Pierre Robin Foundation

Thought we should tell you about our ongoing story and why we started this foundation.

Joshua William Parkes was born 20 October 2008 via C-Section. He was diagnosed with a cleft palate at birth. We were referred to see a plastic surgeon regarding the cleft and he said Joshua also has Pierre Robin, that was all very scary for Grant and I as we didnt know what it was and what the implications were.

This all made feeding very hard in the beginning as Joshua could not latch to be breast fed or suck on a normal bottle. We used the Haberman Feeder for a while till we decided to cut slits in the Avent teat, this made drinking very easy for Joshua.

The problems started when we noticed his breathing was very laboured and said to the doctors that he seems to be holding his breath, they mentioned he might have sleep apnea, and that we should get an apnea monitor and monitor him while sleeping, and they said as long as he is drinking fine there is no problem, we went from one Dr to another with the same problem for them all to tell us the same thing.

Joshua was about 1 month old when we saw that he was really struggling to breath, so we rushed him through to hospital and he was admitted for observation and put on oxygen.
We were told by the doctors in emergency that he has an obstruction and that he might need to have a Tracheotomy put in. That freaked us out as we did not know what it was and how long he will have to stay in hospital.

The following morning they came to us and said there was nothing they could do for us and that they had to refer us through to RED CROSS CHILDRENS HOSPITAL. We were very overwhelmed and scared not knowing what to do next but YHWH (God) had his hand on our son, that is when we met an ANGEL by the name of Sister Jane Booth in the E1 ward and she took one look at Joshua and saw that he had very laboured breathing, she then said that he needed to have a Tracheotomy put in to enable him to breath.

This was the first time that someone actually agreed that Joshua had a problem, confirming what we already suspected – (always trust your motherly instincts). Sister Booth explained the whole procedure to us, which put our minds at ease in knowing we had come to the right place and that it will be OK, YHWH (God) had answered our prayers.

Joshua was sent to ICU for more observation. We decided to go home to try and get some sleep when the hospital called us to say Joshua had to have an emergency procedure done as his breathing had gotten much worse.

He was in ICU for just under a week and was in the E1 ward for about 2 weeks, where I had to learn how to change, clean and take care of Joshua with the trachi. Joshua was discharged from Red Cross Children’s Hospital about a week before Christmas.

Although the trachi saved our son’s life it is a very time consuming process, needing 24/7 personal care as the trachi had to be suctioned about every 15 – 30 minutes in the begging and has to be changed once a day. But the suctioning time has now lengthened quiet a bit. The only thing with the trachi is that Joshua is a lot more prone to getting chest colds than a normal baby as he breaths through his throat.

On one of Joshua’s monthly checkups to Red Cross we went to the Cleft Clinic where we met Dr Lazarus (Plastic Surgeon) who was going to do the cleft repair. Joshua was booked in at Vincent Pallotti Hospital where he had his cleft repaired on the 3rd June 2009.

He had a wide U shaped cleft of 15.5mm – A normal being 10mm and a large being 12mm.
He had his hard and soft palate repaired but the hard palate tore open and we thought he would have to have a second op to repair the tear. But YHWH (God) again had his hand on our son and the tear has all but closed. Joshua now had to learn how to suck properly for the first time in his life.

Joshua is now 14 months old and is able to tolerate a speaking valve (which enables him to breathe in through the trachi but not out of it. He has to push the air past the trachi and vocal cords out of his mouth and nose) which for the first time since having the trachi has given him back his voice. And oh my does he have a voice...

We were told that Joshua will probably have the trachi in for two years, until his bottom jaw has had enough catch up growth. But we are hopeful in that it will come out before then.
We decided to start the Pierre Robin Sequence Foundation to create awareness, as well as a place for parents and family to come and share their stories and offer support to others in need, and to also raise funds to help the children who don’t have money to pay for the reconstructive surgery they may need. This is not limited to only the effects of Pierre Robin, but children born with any facial deformity.

Although we are 14 months down the line, we ourselves do not have all the answers and are still learning new things every day and overcoming new challenges.
We hope our story can help you or someone you know deal with the impact Pierre Robin has on your / their life.

Just remember that every child is a gift from YHWH (God) and that he gives special children to special parents and you are NEVER ALONE!!