Adrian, our first and only child, was born in March, 1st 2003. He weighted 7 pounds 15 ounces and was 20, 1/4” inches height. He was a healthy normal baby. He scored 10-10-9 APGAR.

By the end of the first month, Adrian developed a very high fever and nothing seems to work. We tried a bunch of oral antibiotics but neither one worked. Adrian lost weight and didn’t get over it. He was decayed. After several tries, we decided to switch doctor and the new one detected a urinary infection and decided to treat it aggressively with an intra muscular antibiotic. For 10 days, Adrian received a shot in the morning and another at night. It hurts more Lorena and myself to watch our little son receive his injections without complain, just a small moan. Luckily the treatment worked very well, and Adrian recovered positively.

While he was growing we realized that he was not developing like the other children.  He has a cousin that was born one week before him and was doing so much things that he did not.  With 7 months he did not seat by himself, it could not raise its head and did not roll over; in addition he did not have strength in his muscles.  We began to ask his doctor and she said us that it was normal and that each baby develops at his own steps.

In a visit to another doctor, she worried much about some reflex and other nervous stimulations that did to him and advise to us to visit a neurologist.  We visit the neurologist and he ordered a tomography and an encephalogram. We did not do the tomography because we were scared of the anesthesia.  The results that he told us did not convinced us. It is just that feeling that something is wrong but you just don’t know.

In the beginning of 2004, we hire a physiotherapist to help him achieve his milestones. He noticed that something wasn’t right with his right hip. We took Adrian to get an x-ray and then to a trauma doctor and he confirmed that hi had DDH, (developmental dysphasia of the hip), a common issue with new born and easily treated if caught in time (at three month of age). Of course that wasn’t our case. So we start looking for a children traumatologist doctor.  We found that finding one wasn’t easy. I think there are only three in Santa Cruz. His surgery took place January 21st and supposed to be a success. He had to be in a cast for 90 days. After 4 weeks in a control x-ray the hip was out of the hip socket and back to the surgical bed for correction. After two weeks in another control, the hip seemed to be out again. This time we took a tomography to confirm the situation of the hip. Also we used this anesthesia to do the head tomography. Anyway, the hip was out again so the cast was out.

After this, we didn’t know what to do, so we went to his neurologist to see what he had to say about the tomography. He just looked at it and said it was OK. Moms, and grandmas, instincts kicked again and took him to another neurologist in Cochabamba, a city about 40 minutes fly, to double check it. This one scared the Jesus out of us. We were concern about the hip and he told us that he had Cerebral Palsy. Say what? We cried a lot… we were devastated. He told us that he couldn’t be with a cast for to long, that he had to do so much work to minimize the CP. Back in home we start to search for treatments. In a family meeting an aunt told us about this hospital in Argentina, Hospital Universitario Austral, witch had very good doctors. As a young couple with a small child, we didn’t have the resources to go there, but with the help from ours families and from this aunt, we took Adrian for a full study.

So in April, we went to Argentina for hip and CP appointments. Once there the doctors check him and with a MRI ruled out CP, that was a relief. But it wasn’t all right. He had some damage someplace in the brain that had affected his motor skills. We asked them what to do with his hip and explain to them what the other doctor told us. They recommended to “fix” the hip ASAP so this wouldn’t interfere with his developmental milestones. One of the doctors thought it was recommendable to do some metabolic test to rule out a metabolic disorder. By that time, we didn’t have any ideas about metabolic disorders. We took Adrian, to “Laboratorio Dr. N.A. Chamoles” and leave the urine and blood samples. This is the only lab that does this kind of tests in all Argentina, and one of the few in South America.

We went back to Santa Cruz – Bolivia, the city we live a little more calm, unaware of the A-bomb that was going to be drop on us.

A few weeks later we received a call from Dr. Chamoles telling us that something was wrong with our baby. “Get Albicar (L-canitine in Argentina) and give him 1g a day for 30 days and then send us some more urine and blood to redo the labs. Don’t feed him with proteins. Your son has an Organic Acidemia know as 3MCC” he told us. We moved the earth to get this drug and started with “treatment”.

With this little information I jumped to the Internet to find out what was this thing that our baby had. We found some technical information (you may need a degree to understand it), some devastating stories and some not to scary ones. One of the sites I went thru was OAANEWS.org and they had a mail list that really help us a lot. By that time we didn’t know too much about OA’s and had so many questions. Some of them were answered by the mail list member and especially with “plain English”. That prepared us a little more and we had an idea of what to ask the doctors.

After the 30 days we sent the samples and waited for the results to come out. With the results we fly back to Argentina for new appointments with the doctors.  With a little more knowledge, the doctors explained to us what 3MCC was and how was going to be the treatment. The also arranged an appointment with a metabolic nutritionist that explained Adrian’s diet and the drugs he was going to used.  By that time Adrian was 1 year 2 months; he didn’t walk, and was about 22 pound. 1.5 g/kilogram of protein, 1g of carnitine, 1,2 g of glycine.

About the hip, they told us that he had to be metabolically stable to perform a surgery.

After knowing what was the main issue with Adrian, things changed. We kept him with therapy for motor skills and with a very controlled diet and medicines. He recovered very well. He gained weight.

Six month after diagnosis, he was stable and ready for surgery. We started to make the arrangement and back to Argentina. The surgery took place in October 2004 and was a success. Adrian handled the surgery pretty well, and stayed in the hospital for 3 days only. One of the most shocking moments was when I took my little boy to the surgery board. They want me to take him so he would be calmer. I felt his fear when he graved me in a big and strong hug. Then the anesthesia went in and he felt sleep, but didn’t release me. I felt an enormous emptiness. I still remember it like if it was yesterday. A few weeks after, we returned home with Adrian in a cast.

Two months past by, with all the troubles that is having a child with cast and finally the cast was removed December 22nd, almost one year after all begun. He cried a lot but he calmed very soon. We went to the apartment and he started crawling. That was our Christmas miracle for us. But we knew that our job wasn’t finished yet, we had a long way to go.

Adrian finally walked a few months after he turned 2 years. He is metabolically stable and by now is a normal child. The hip is going regular. Maybe he will need a new surgery in the near future.

Now that I can think a little be more clearly, I realize that all this events, the hip, the CP, etc., lead us to truly find the real reason our baby wasn’t developing like he should. If the hip wasn’t wrong we maybe wouldn’t go to the doctors and particularly to that neurologist that told us that he had CP. These really shuck our world and got us to Argentina and to a final diagnosis and treatment.

I have to thanks our FAMILY, especially Lorena’s mom that traveled with us to Argentina and stayed with them for a couple of weeks, the doctors in Argentina, Dra. Grañana, Dr. Amartino, Dr. Albarracin, Dra. Marchione; his doctor in Bolivia Dr. Arias; and the people that supported us in many ways, Carol and Kathy.

Thank you very much.

Fernando, Lorena and Adrian Lopez

Calle Warnes # 677

Santa Cruz de la Sierra   

Santa Cruz  220    Bolivia

(591) 3 – 3322350

flopez@transierra.com.bo