Adriaan de Lange
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Our names are Carine and Martin de Lange and we have a beautiful son, called Adriaan, our first born. Adriaan has a
trache. We live in Johannesburg, South Africa, and I would like to share our story with you:
In June 2001, I proceeded on maternity leave, an expectant mother with dreams of a healthy baby. Not expecting that anything could go wrong, as both my husband and I are two healthy individuals, Adriaan experienced breathing problems as soon as he was born and was intubated an hour later. He was admitted to a Neo Natal ICU where he spent 4 weeks. Doctors did not know what was wrong. When he stopped breathing on a number of occasions, the decision was made to immediately transfer him to the Red Cross Children's Hospital in Cape Town to do extensive tests.
A private flight was chartered by our medical aid with a doctor and nurse and we were flown to Cape Town. Within an hour of landing, the doctors operated on Adriaan to do a tracheostomy (this operation entailed inserting a plastic tube directly into his airway {throat} to enable him to breath,
thus not breathing through his mouth or nose) in an effort to save his life. During the operation it was found that his vocal cords were paralyzed closed causing him not to be able to breath on his own. The operation was successful. We spent the next 3 weeks at the Red Cross Hospital where my husband and I were trained to look after our son. The only other option was for Adriaan to spend his life in hospital.
It was a very traumatic and stressful time in the life of our family. Adriaan also battled to feed by mouth and a month later another operation was performed, again in Cape Town, this time at the Vincent Pallati hospital when a tube was inserted into his stomach through which we were to feed him. At a later stage, during February another operation was performed to put in a valve (Mickey) in his stomach. I took 5 months leave, some annual leave and some maternity leave. Adriaan spent less than 1 month at home - the rest of the time was spent in hospitals.
When I returned to work it was with a heavy heart, although I love my job, my first concern was the welfare of my baby. We had to employ a full-time nanny whom we trained to look after Adriaan. There are now three people who are capable of looking after Adriaan, being my husband, the nanny and myself. Adriaan cannot be left with his grandparents for them to baby-sit or any one else. The hospitals in Johannesburg are not proficient in caring for
traches with the result that either my husband or I have to be available most of the time, which of course puts a lot of strain on both our careers. Adriaan's condition is very rare in South Africa, as there are currently only ±180 children with
traches.
Adriaan requires full-time care and although he is a beautiful and happy little baby, looking after him is very hard and stressful. Adriaan still gets sick very often as a result of the
trache resulting in upper viral infections, which in most instances requires hospital visits. On an ongoing basis he needs physiotherapy for his legs as a result of a shortage of oxygen at birth, physiotherapy for his lungs, speech therapy, dietician visits (due to the tube that was in his stomach) and ongoing visits to pediatricians and neurologists.
Adriaan also had no voice as a result of the trache. This resulted in us having to always keep an eye on him - you can never let him out of your sight. You cannot hear him cry at night and, therefore, our family do not sleep very much.
The gastrostomy was removed when Adriaan was just over one year old in August 2002. However, since then we have experienced problems with Adriaan vomiting and having diarrhea the whole time. Our doctors can't establish what the cause of it is and the poor little guy has been suffering from diarrhea and vomiting for the past 5 months now. Although Adriaan is tall for his age, he only weighs just under 9kg. He is extremely thin and we are very worried about this. Hopefully in January 2003 they will be able to do some tests to find out what is causing it.
Adriaan is now (December 2002) 17 months old, although he is not tolerating his speaking valve, he is
vocalizing and has started to say "daddy", or in our language, (which is Afrikaans) "pappa". He is running around the garden like any 17 month old.
He is a beautiful little boy and a very happy and loveable child. He loves hugging and kissing his grandparents and us. He loves playing outside. He is growing up very fast and we are adamant to try and raise him as normal as possible although we tend to be over protective especially with other children. Children tend to think that the
trache is his dummy and want to touch it or pull it to put it in his mouth!
We love Adriaan to bits and would do anything to make his life easier and happier. We have found out about Dr. Cotton from America through this website and has asked him his opinion on Adriaan. He indicated that he would be willing to look at Adriaan once Adriaan turns 2 and there was no improvement. For us to go to America will cost a lot of money taking into account the Rand : Dollar exchange rate and we have been talking to various people regarding starting fund raisers for Adriaan.
If anyone has had dealings with Dr Cotton, I would like to hear your opinions on the operations he has performed and your children.
As a final word, I would like to encourage all of you with trache-children to place your trust in the Lord. Prayers and encouragement kept Martin and I strong and despite various worries, our faith in God has pulled us through each and every nerve-wrecking incident. Adriaan has also been an inspiration to a number of people and has brought more people to Christ than any of us in the family have done up to now. Adriaan is a blessing to all!! He is our little angle.
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Update, Jan 2005: We went to Cincinnati during January 2004 in order to see Dr. Cotton and to get his opinion on Adriaan, our local doctors were of the opinion that Adriaan will outgrow his bilateral vocal cord paralyses but we felt it would be better for our own peace of mind to see Dr Cotton in light of all the good things we heard from him. Also Adriaan had diarrhea for the past 20 months and our local doctors could not find the problem.
We saw Dr. Cotton and the news was not what we expected, he told us that Adriaan has over and above the vocal cord paralysis a narrowing of the airway and in his opinion although the vocal cords are coming right Adriaan won't ever outgrow the narrowing. We were devastated.... However, the good news was that the gastroenterologist saw Adriaan and found the cause of the diarrhea. Adriaan had a feeding tube when he was small (gastrostomy), and apparently when our local doctors inserted the gastrostomy they went though his colon and then in his tummy so when it came out there as a hole between his colon and tummy called a fistula which caused that he was not digesting any of his food. We were shocked. The doctors at the Cincinnati Children's hospital was wonderful and immediately assisted us to arrange for it to be fixed. They fixed the problem in February and since then Adriaan never had diarrhea again!!! It made such a difference to our lives! However, Dr Cotton wanted Adriaan's stomach to heal first before he would consider to operate on his airway. That meant we had to return to South Africa.
We returned to South Africa and immediately started talking to our medical insurance (aid) to try and see if they will assist us with the costs. They were not willing to even though the operation cannot be done in South Africa. That meant that we were back to fund raising. With assistance of too many people to mention we were back in Cincinnati on 13 August 2004. Adriaan had his airway reconstruction on 23 August 2004 and spend 5 days in ICU. The operation was a huge success and by the 28 August Adriaan was up and about and doing great. He spend another week or so in hospital and was then released. We stayed for another month for a couple of scopes. We stayed in the Ronald McDonald House, and we were so impressed by the house and all the volunteers. It is a wonderful place to stay and without them it would never have been possible for us to financially be able to take Adriaan for this operation.
Every time the scope showed that the operation was a great success. However, it also showed that Adriaan airway is still very floppy
(laryngomalacia) but Dr. Cotton is hopeful that Adriaan will outgrow it. We returned to South Africa without a tracheostomy on 29 October 2004. What an emotional rollercoaster! Adriaan is still doing great although we have landed up in hospital 3 times as a result of pneumonia. We are watching him very carefully but are so grateful and thankful, God has really blessed us so much this year. We believe that an army of angels are looking over our little precious boy.
Adriaan is our little miracle and we hope that our story will give other parents hope that someday everything will be
OK.
Adriaan shortly after the operation
His scar is looking great
Should you wish to contact me you can contact me, Carine, on cmdelange@sbic.co.za
