THE DIVERSITY OF MY THOUGHTS

Ariq, our first son, suffers from Cerebral Palsy

In Cerebral Palsy, Family, Medical on September 15, 2008 at 6:14 pm

When our first son; Ariq, was born, he was diagnosed with Cerebral Palsy, as quoted from Wikipedia, Cerebral refers to the cerebrum, which is the affected area of the brain (although the disorder most likely involves connections between the cortex and other parts of the brain such as the cerebellum), and palsy refers to disorder of movement. CP is caused by damage to the motor control centers of the young developing brain and can occur during pregnancy (about 75 percent), during childbirth (about 5 percent) or after birth (about 15 percent) up to about age three.

These symptoms can also be seen from Apgar score ranges from zero to 10. The five criteria (Appearance, Pulse, Grimace, Activity, Respiration). The Apgar score was devised in 1952 by Dr. Virginia Apgar as a simple and repeatable method to quickly and summarily assess the health of newborn children immediately after childbirth.


Apgar Score

Although CP is a non-progressive disorder (it doesn’t worsen), its effect may result in even greater difficulties in terms of balance and coordination (including focus). There is no cure for CP, medical treatments are applied simply to minimize the effects on those who suffer from this disorder. This CP often occurs as the effect of premature birth or a late one. Ariq’s case has been the effect of his late delivery, back then, we were just a couple of foolish parents, who did nothing but agreeing to wait for the never-delivering baby. We knew it’s late but why did we agree to wait for another week? A useless week I regretted most, a week of waiting impatiently, we consulted nobody but that old witch gynecologist…Had I known..I would have…as I said before, it was a useless week because Ratna will have a sectio anyway so why wait any longer?

A week prior, her womb was already 9 months old (timetable said that the delivery should be around September 26th) but up until October 1st, there wasn’t any signs of the baby coming out so we thought that it would be best for her to run a USG (this had been our initiative), the result was frightening (now and should’ve been that day), the membrane liquid was drying and also the placenta is quite old (indicating that the baby should be out instantly). Here’s why, as the fetus grows, it feeds on the membrane liquid and relies on it for breathing. This membrane liquid grows plenty along with the growth of the fetus. When it reaches the age of 9 months, the fetus, now in the shape of a baby, should be delivered soon because the liquid cannot supply appropriate foods for the baby any longer. After this point, the quality of this liquid shall deteriorate while the baby will need constant supply, that’s why it leads to brain-related disorders.

Guess what happened, after seeing the USG result, the gynecologist prescribed her some medicines and told us to give another week just in case by October 7th, there would be signs (what sort of signs you expected, old witch?) and bloody hell, we agreed. It was all because of lack of information, we should’ve been more critical in terms of the consequences that might occur because of the delay (we should’ve consulted any medical websites for guidance, but unfortunately we didn’t do it, we were too optimistic that everything suggested by the doctor should have been good for the baby).

It was a clear afternoon of October 8, 2002, Ratna would be operated in the evening, I couldn’t sleep since the previous night, I kept on wondering what would happen the next day, questions such whether or not there would be problems haunted me around the clock, my eyes didn’t even twitch a bit.  This had been the follow up of the one-week-wait after the prescription and since nothing happened (just like we had predicted), the gynecologist told us that Ratna would be operated the next day. Finally, Ratna was brought into the operating room, I wasn’t allowed to come since nobody was supposed to be in but the doctors and team. There were my mom, sister and husband, my two younger brothers and several aunties from my Dad. (Dad passed away on March 3, after being hospitalized and a 3 week-coma at RSCM, I am glad I have told him that Ratna was pregnant before he went comatose).

It was after Maghrib, when one of the nurses fetched me to follow her into the nursery, the baby was born. Off I went inside only to find that my son’s left leg, precisely by the knee, was dislocated (sobbing now), she told me that he was delivered in lack of oxygen but she assured me that this condition wasn’t the result of medical misconduct, everything that happened was merely resulted from internal flaw, that this wasn’t human error or malpractice (yea, right). I gathered all my strength not to cry no matter how heart-broken I was that evening. I kissed his forehead and started reciting adzan to his right ear.

All I remember afterwards was my eyes couldn’t hold the tears any longer, I grabbed my sister’s hand and told her what happened, trust me, she couldn’t get much more stressful than that evening so she carefully took my mom out from the crowd and told her what happened. Here, I gave my mom all the 4 thumbs I had for she didn’t panic at all. She told me to keep what happened at the nursery from Ratna. We all agreed that she would be shocked to find out about all these.

The upsetting facts added up, that night the light went off so she had to bear the heat despite the agonizing feeling of the worn off sedation, the pain was gradually coming, after being operated, ideally it would be best if she could lie on a cozy bed but too bad the mattress was uncomfortable, it was too thin, away from being proper, not to mention cozy. Every time she moved, we could hear the creaking sound of the springbed. She had to sleep in pain, heat and also darkness. (I love you, honey)

The following morning, I told Ratna that Ariq had difficulties in breathing because of the phlegm in his throat and chest, I told her that we (mom and I) needed to take him to Fatmawati hospital to vaporize the phlegm so that he could breathe easily. I lied, it was because we planned to have his left leg plastered. We agreed to keep everything from her, remember?

We went there by ambulance, a nurse was coming with us, she’s supposed to hand over the letter from the hospital for X-Ray. As soon as we got to the hospital, there were so many people at the orthopedics so we had to wait. As we were waiting, I couldn’t take my eyes off of the fine-looking baby, my son. At first, I smiled remembering our predictions about how the baby would look like, then suddenly I cried, not knowing how such things happened to this baby.

Afterwards, we went inside, it was Dr. Arnold, an orthopedist for the hospital, he checked and confirmed that the dislocated knee should be plastered for about a week or so, he assured us that young bones fixed quickly and there were good signs also, Ariq moved his left foot as the doctor tickled it. The nerve system was a OK. During the process of plastering, I cried again, the scene was much too agonizing to watch.

Back at the hospital, Ratna asked how it was doing so I said it went well, I was glad that she didn’t fuss about it further. The next day, she asked me to fetch Ariq, it’s breastfeeding time. She tried hard to move against the pillow on her back, I had pity for her; therefore, I was glad that she didn’t know about the dislocated knee. Finally, Ariq was in the room, she tried to have him in her arm, I could see her grinned in pain but all washed away when I saw her happy face. I remember she said that our son is fine-looking. Her next question was like a slap to my face, she wondered why Ariq was so heavy (that time I was either gonna laugh or cry in confession, he was heavy because of the plastered knee, honey). Ariq was wrapped in a blanket so that no way she could see the banded knee, but then again, luckily she forgot that already and I was glad. After ten days, we took Ariq to see another orthopedist, the late Professor Soelarto from Setia Mitra hospital, he observed that the result was okay and the dislocated knee was attached already. He assured us that hopefully there wouldn’t be trouble in the future.

One traumatic event seemed to trigger another, as day went by, we gradually found out that Ariq was actually much worse than it seemed. First of all, his knee was dislocated, then he was born without proper oxygen, then this lack of oxygen thing (the tolerance is ranging from 5 minutes to 12 hours most not a week, dumb ass!) lead to his poor motoric abilities, senses of balance and coordination and many more. This poor motoric skill lead to his difficulties in breast suckling. As result, Ariq spent most of the time crying because of his hunger. This has resulted in even more stressful wife, this lead to her inability to breastfeed. Breastfeeding should be in a state of comfort and safe, when a mother is distressed, she will not be able to do so.

We found out about this from Dr.Pudjo, a pediatrician, a senior one from my childhood. She was my pediatrician, at least that’s what my mom said. Being a senior Pediatrician, she knew what to do, she advised us to mix the formula with starch (the liquid you get from cooking rice). This really helped Ariq fulfilled his hunger, in addition, she also advised us to buy bigger pacifiers to help him drink his food.

One of my aunties happened to be a nurse, nutritionist and also a head master in one of the schools for special needs. This Aunt Gitta Van Engelen (she’s married to My Father’s younger brother Beqi Saifuddin), gave us frequent visits to observe what really happened to our son, she wanted to know why it was so difficult for Ariq to suckle from the nipples or pacifiers. Then she came to the conclusion that the lack of oxygen had weakened the muscles around his mouth, making it hard to suckle. Another consequence of the late delivery emerged to surface. This couple has been the “Godparents” for our Ariq both morally and financially. The spent endless time raising funds for his therapies and medications. We can’t seem to thank them enough for all of these.

My mom then took us to see another Orthopedist, Dr. Penny Kusumastuti, her husband, Dr.Zainal A Isma, was my dad’s classmate in FKUI. She specializes in child orthopedy. Based on her observation, she found out that Ariq’s palms, specifically around the thumbs, could not open so that grabbing or holding would be troublesome. Then she created a special molding to place his palms in such a way that the thumbs were forced opened. That way, the muscles would be flexible.

Cerebral Palsy patients later on may experience disturbances of sensation, cognition, communication, perception. In Ariq’s case, these symptoms emerged early, that’s why we were advised to join physiotherapy for him asap. Based on the therapist observation, he concluded that Ariq suffered from Athetoid or dyskinetic People with athetoid CP have trouble holding themselves in an upright, steady position for sitting or walking, and often show involuntary motions. For some people with athetoid CP, it takes a lot of work and concentration to get their hand to a certain spot (like scratching their nose or reaching for a cup). Because of their mixed tone and trouble keeping a position, they may not be able to hold onto objects (such as a toothbrush or pencil).

We took Ariq for a regular therapy at Fatmawati Hospital but somehow we didn’t see any meaningful progress from every exercise he did, every hope we had, every teardrop he shed and so on. These exercises are designed to accomodate, develop, maintain and restore maximum movement and functional ability as the patient grows old. In order to achieve maximum results, often times, these patients are advised to use supporting tools that vary according to the desired effects and area of the body infected. Afterwards, we visited an unlimited number of alternative therapies and medication everywhere, including the one at Bangka Raya as suggested by one of my friends Dotty.

After undergoing endless therapies at fatmawati Hospital, we registered Ariq at Kitty Center, Bona Indah. It’s a school for children with special needs. Here, we saw other children, most are far worse than Ariq, unlike our son who looks and appears normal, his problem lies on his legs, hips joints and balance/coordination, these children could barely lift their heads or arms. Here, we thank God again for his blessing, we’re grateful that our son is not that bad. But this isn’t the best and ultimate part..

The jaw-dropping facts would be fascinating, Ariq had done two years of Physiotherapy under a false method, he was diagnosed wrong (let me introduce Mr.Sakib, who appears like a CP patient himself, his moves are attaxic, this dumbass was the one who made wrong diagnoses) So Ariq had spent a useless exercise, these exercises should be the ones with the aim of strengthening because Ariq’s muscles are weak. Sakib had diagnosed Ariq as athethoid, with stiff muscles, so every exercise toned him down. Such an irony, right? (Astaghfirullah, forgive me ya Allah).

Here at Kitty, everything is well-organized, it’s a team work, every student is sometimes assisted by 2 or more therapist according to the need. I’m glad that finally Ariq is in the right hands, every therapy is done with the involvement of the parents, they have lesson plans, they have regular meetings, regular orthopedics consultations and seminars. They involve us in every program because relying on school time only would not be sufficient. The therapies are divided into:

  1. Physiotherapy: Muscle strengthening.
  2. Occupational Therapies: Motoric-based therapies, senses-sharpening.
  3. Sensory Therapies: Covers a session of playing with dough, beans and nuts, flavors exposure (sweet, salty, bitter, sour) and also a session of brushing therapies using special brush and techniques (applied to hands, feet and back). Facial massage is often given to stimulate the facial muscles.
  4. Speech Therapies: Oral drill, pronunciation, strengthening muscles around the mouth which in the end helping the patient to stimulate the use of those muscles for speaking, suckling and so on (Ariq still has trouble drinking using a straw)
  5. Educational Therapies: Class-based programs, concentration drill that resemblance kindergarten environment.
  6. Behavior Therapies: Mood disorders and over anxiety therapies.

These therapies are given on a weekly basis, everything is well-programmed just like I mentioned previously. Every child is given a target that must be achieved in a certain period of time. Alhamdulillah, Ariq is now improving a lot, he learns a lot from his new school. We express high gratitude to all the teachers and therapists who have spent quality time with Ariq, patiently, through all his ups and downs.

Here are some therapeutics instruments Ariq is using:

STANDING FRAME – The body is securely fastened in an upright position to maintain the legs muscles and make them stronger to walk.


Keep smiling, keep shining, he never complains

AFO (Ankle Foot Orthoses) SHOES – A specially designed pair of shoes for those with weak ankles.


Ankle Foot Orthoses

SPLINTS – A pair of rigid device to prevent motion of a joint or of the ends of a fractured bone.

WALKER – A crutch like with wheels to help with the walking therapies.


Fun therapies, he seldom cries no matter how hard he endures each session.

Ariq is still undergoing his therapeutic sessions until today, besides physiotherapies, swimming and horse riding are also advised for those with such illness. Both horses and dolphins are reported to have emotional bonds with those suffering from CPs or anybody considered with special needs. I’m glad that ever since he was a baby, he never had trouble with water, he has always enjoyed water splashes, especially swimming, both indoor or outdoor.


Fun at the garage


Water splashes


Definitely not scared

null


Ariq’s way of back stroke

Now with Baraka and Dad:

Thank you Kitty, thank you for the patience in treating and training Ariq. Hopefully he walks soon.

 

Advertisements
  1. Hi Ky, ndak nyangka ada teman seperjuangan dari FSUI, hehehe… Memang jalannya panjang ya Ky, sepanjang hikmat yang kita perlukan untuk mengerti rencana Yang Di Atas memberikan anak-anak special ini ke dalam kehidupan rumah tangga kita. GBU always Ky…

  2. Terima kasih Grace, kita yakin ini semua takdir dan Tuhan yakin kita mampu mengemban tanggung jawab ini. Tinggal bagaimana cara kita mensikapi dan mengambil hikmahnya. Semoga semua anggota keluarga kita sehat seperti yang kita harapkan. Amin

  3. Keep up the spirit for the family, you are a family man, dude. Don’t forget Allah is near and hears us every time we pray.

  4. Your site looks great
    Thank you for creating a best site.

  5. Eky, semoga Ariq tambah banyak kemajuan yang positif ya.. (btw emang ganteng tuh si Ariq..! ;P) Insya Allah semuanya bertambah baik dan baik.. Amiin..
    Semoga Eky , Ratna dan Baraka bisa kasih support terus buat Ariq..
    Pasti Allah kasih Ariq kelebihan yang nggak ternilai di balik semua ini..
    Daaghh Oom Ekyyy…!!

  6. Terima kasih atas doanya tante Evi, semoga segalanya bertambah baik dan baik, kita memang yakin semua ini ada hikmahnya. Sekarang Baraka dan Ariq memang The Dynamic Duo, saat bangun pagi, yang pertama dilakukan adalah ngeliat abangnya, senyum terus ngoceh seperti negur. Semoga Om Ari, Tante Evi dan Adik Hafizh sehat dan selamat sampai kembali lagi ke Jakarta. Jangan lupa oleh-olehnya ya? Daagh Om Ari, kaos Thrasher-nya bagus

  7. aduh.. senengnya liat ariq udah mulai jalan… aku masih nungguin dewa bisa merayap nih…. lumayan sih sekarang mulai bisa nearly 100 m/day… Yang sabar aja deh.. mudah mudahan perjuangan kita ada hasilnya yah… amin… Sama dong riq…dewa juga sukanya berenang dan naik kuda.. apa berenang sama dolphin ada manfaatnya.. belum pernah nyoba tuh.. ikut dong kalo ariq lagi kesana…dimana sih..??? Ok deh teman seperjuangan..keep up the good work yah…

  8. […] whenever he wants something. I guess I don’t have to remind you that Ariq suffered from Cerebral Palsy due to the lack of oxygen during the delivery process. I didn’t say that he’s mentally […]

  9. […] Baraka, our second son, was born on February 9th 2008. We thanked Allah SWT that he was born healthy and handsome. We didn’t actually plan to have another baby in regards to the fact that our first son, Muhammad Ariq Azzarel was born with cerebral palsy due to lack of oxygen. We fully blamed ourselves for being ignorant during pregnancy, well, not totally ignorant actually. Both of us really paid attention in terms of nutrition, vitamins, medicines and so on. We really followed what the Gynecologist told us. Later on we learned that we’re not supposed to ’swallow’ any pieces of advice. We should’ve asked for others’ opinions and all those sort of things. More stories about Ariq can be found here. […]

  10. Good day to you, we almost have the same story regarding our son,my was son was also diagnosed having an athethoid type of CP,but you are right and much lucky when compare to the extent of worseness of this syndrome that make our sons suffered so much.Your son is more obviously look normal than our son including those patient that you have seen in theraphy center.My son was 5 years old already,and up to this moment I have this guilt feelings why this happened to my son.Can you give me a favor ,where did you got those walker and stander if they are just improvised?I believe that those type of materials will make my son have his chance to walk.You can publish your answer in this website so everybody can read it.

  11. Dear Rowena,
    Thank you for spending some time visiting my humble blog. In regards to your story, if I’m not mistaken, athethoid is the rigid kind of CP with some involuntary movements. This means extra work since I believe, in order to be able to undergo any physiotherapy sessions, then first of all you have to relax the stiff muscles because they will hamper the therapy. This relaxation may be in the form of botox injection or alternatively, a cranio-sacral therapy or famously known as brain gym. We thank God that our son, Ariq shows rapid improvements from all the drills he does at school and home. I live in Indonesia, we bought all the therapeutic instruments such as the splints, the bandages, the standing frame and also the walker from his school. Ariq only used the walker for less than 3 months since he then could walk only with the help of the splints and AFOs.
    I assure you that there’s no use crying over your son’s condition as well as finding who’s to blame. We did regret things for a moment but then again we went on trying to do our best for Ariq. Hopefully this answers your question and also motivates you to do the best for your son. Good luck.

  12. […] enough for Ariq. There was still a glimpse of feeling that we were to blame for what happened to him. Much too many “Ifs” to mention: If only we had asked for second opinion, if only we […]

  13. Wah. Lam kenal buat Ariq. Anakku juga cp. Tipe berat. Kaki dan tgnnya lemah. Bisa dilihat di http://www.Anakkucp.Blogspot.Com, tapi aku msh belajar ngeblog. Ariq beruntung krn punya ortu spt anda. Dan untuk ibu poppy, saya liat dewa di kick andy. Semuanya memotivasi kami. Thx ya. Main ke rmh dong kalo ke bdg ya semuanya

  14. What a beautiful, informative and inspiring story of your Ariq. Sampe terharu bacanya. Angkat topi buat papa Eky dan mama Ratna yg hebat pantang mundur membantu Ariq. Semoga perkembangan Ariq terus melaju pesat.

  15. @ Ake, terima kasih atas doa dan seruan semangatnya, alhamdulillah kita selalu berserahdiri pada Allah SWT agar menunjukkan jalan yang terbaik buat Mas Ariq. Semoga Allah mendengar doa kita semua, amien.

  16. Eky, lo dan istri adalah orang-orang terpilih.. Allah tau lo bedua mampu, makanya Dia titip Ariq ma lo be2.!! May Allah Always be with you and family ya…

  17. Amin Ya Rabbal Alamin, terima kasih atas doanya, Ima. Semoga Allah SWT juga selalu melindungi kalian sekeluarga.

  18. […] child with special needs can indeed be frustrating sometimes. I explained that my son suffers from cerebral palsy, a condition somewhat similar to his son and that I understood taking care such a condition is not […]

  19. Dear Ariq’s family, I am so happy for I could read this encouraging story of your precious son Ariq. May God bless you and your wife Ratna with His rich blessing of peace and grace! I really feel that your son Ariq is a specially chosen one by God in order to bless us and other children with special needs. I will pray for him and you. Thank you! With Love, Joo

  20. Dear Joo, thanks a lot for the caring support. We maybe haven’t done enough for him but we are proud to say that we’ve been doing our best to give him proper care, attention as well as education. I also feel very grateful for having Ratna by my side with her endless affection for all of us. Indeed, we do believe that children with or without special needs, are HIS, lent to us ‘temporarily’. So we believe it’s best to safeguard them by all means. Thank you for your kind attention and prayer. God bless you too, my friend….

  21. […] of “abnormal excessive or synchronous neuronal activity in the brain”) due to his cerebral palsy. This seizure occurred monthly and with a similar pattern. There’s more, he was hospitalized […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: