Help Armand with Pierre Robin sequence

Good day, we are Bernhard and Monique the parents of Armand Bekker.

We are resident in Hazyview, Mpumalanga, South Africa close to the Kruger National Park.

PIERRE ROBIN SEQUENCE:
Armand our first born son was born on 19 November 2013 - and diagnosed with Pierre Robin Sequence a set of abnormalities affecting the head & face, consisting of a small lower jaw, a tongue that is placed further back than normal, and a opening in the roof of the mouth (a cleft palate). This condition is described as a "sequence" because one of its features, an underdeveloped lower jaw, sets off a sequence of events before birth that cause the other signs and symptoms. Specifically, having an abnormally small jaw affects placement of the tongue and formation of the palate leading to glossoptosis and cleft palate.  

Pierre Robin Sequence, can lead to difficulty with breathing and problems in eating in early life. As a result, some affected babies, like Armand, have an inability to grow and gain weight at the expected rate.  

KIDNEY DISEASE:

Armand was diagnosed with a Kidney Disease, his right kidney measures approximately 6.3 x 2.5cm, there are however at least 3 simple appearing cysts in the right kidney and the left kidney has multiple cysts of varying sizes that measures to approximately 5.3 cm in diameter. His left kidney is non-functional and can cause frequent infections that will result in having the left kidney removed.

ICU FOR A MONTH:
We were so overjoyed that our little angel Armand was born via C-section on the 19th November 2013 at 09h35 in Nelspruit Medi Clinic.  But the joy was short lived, during the time his APGAR tests were underway the Doctor discovered that Armand was having serious trouble breathing and that he had a cleft palate  and an underdeveloped lower jaw. They showed him to us for a few seconds and then the Doctors and I  ran out of the theatre and he was immediately rushed to the Neonatal ICU (NICU). We still recall him turning "as blue as a Smurf", and everybody around us, the Doctors and Nurses, running to try and help him. Also looking confused as to why the normal oxygen support did not work?

Armand couldn't breathe on his own and turned an even darker blue, so he needed immediate help with his breathing. Our Doctor discovered that his tongue obstructed his airway and he had to be placed on a ventilator. The breathing tube serves as an airway by letting air and oxygen from the ventilator flow into his lungs.

As soon as he was breathing with the support of the ventilator the Doctor arranged for 5 medical experts to come and  assess Armand's condition, the specialists were flown in from all over the country. After the expert's assessments the Doctor came to tell us that Armand was diagnosed with Pierre Robin Sequence and that he would stay in Neonatal ICU for special care.

We can still recall how desperate we felt as we had no idea what Pierre Robin Sequence was and what it would intail. The founder of Pierre Robin Foundation, Leigh Hawthorn and David Du Toit phoned us immediately for support. They answered our many questions with such care and we were so greatful for their support.

Although Armand's breathing was kind of under control thanks to the ventilator, his feeding had to start and there was no way that he could physically be able to do any suckling as his hard and soft palate was not joined and his tongue was located to the back of his mouth. So the Doctors had to insert a Naso-gastric tube in his stomach. An Umbilical Venous tube and Arterial lines were also inserted.  He was also connected to a Apnea Monitor. Now at least Armand was stable with the support of the machines.

Armand was placed under sedation for two weeks to prevent him from pulling out his ventilation tube, naso-gastric tube and arterial lines. The Doctors decided that they would do the Tongue/Lip Adhesion Operation and that they would remove the ventilator and hope that he would start to breathe on his own. If all else failed and he was still unable to breathe on his own, they would do the Jaw Distraction Operation.

OPERATION:
The Tongue/lip Adhesion Operation was done to pull the tongue forward so that he would be able to breathe and feed on his own. The Tongue/Lip Adhesion Operation only lasted for 3 days before it came apart, unsuccessfully. However, Armand started to breathe without the Tongue/Lip Adhesion and the Jaw Distraction Operation was put to a halt. Armand received a special cleft plate to help him with his feeding and the Speech/Feeding Therapist could start with his feeding excercises. It was a long and tedious road to get him to feed as it was such a strain to feed and breathe at the same time. After numerous efforts and expenses to try all sorts of bottles we discovered that Medela's Harberman Feeder was the best bottle for Armand's condition.

After a month in ICU and many long days and nights at his bedside we managed to get Armand to feed on his own by using Medela's Haberman Feeder, (donated to us) his breathing improved drastically and when the new cleft plate was inserted he was well on his way to gain some weight.

Armand was discharged from hospital the 22 January 2014, we were soooooooooooo excited to finally have him home. However, shortly after his discharge a new problem arose. Armand was diagnosed with a Chronic Kidney Disease. Armand's left kidney is a non-functional cystic mass, however, his right kidney is still functional although it has 3 cysts on the lower part of the kidney there is no reflux so he is still able to manage with just the right kidney at this stage. The left kidney will cause multiple infections that might lead them to remove the left kidney at a later stage.

Armand is such a happy baby boy with some serious issues we have to take care off in the near future. We do have a medical aid but they already refusing to cover some of the life threatening medication and test etc. To date the expenses has been close to R300 000 ( $27 000) and still continuing daily. 

FUTURE:
Armand will have his hard palate repaired at between 9 months to a year old. His soft palate will be repaired at 15 months. At 3 years old they will do an operation to help him with his speech and then we will work closely with a Speech Therepist. At 5 years old they will look at his jaw and hearing. We will work with a dental expert and he will have his hearing tested. At 13 years old he will have cosmetic surgery done to restore his chin if needed.

So needless to say South African medical insurance is not the best in the world and basically it comes down to us as parents to pay all his medical expenses that is not covered by die medical insurance, therefore, we need help urgently as financially we are not able to afford these extremely high costs for our lovely baby boy as our medical insurance is already exhausted for the new year. Any form of donation will help us immensely and we are so grateful for any support.

For more info you are welcome to contact me Bernhard Bekker [email protected]