My Baby has ROP!!!!
June 3rd 2006 – Ishaan was born. It was a great moment in my family. After many years of treatment and prayers, Neethu and I were proud parents. But he was born in less than seven months of pregnancy – 27 weeks of gestation as neonatologists describe it. Ishaan weighed just about a kilogram and was premature by two months. He was in the Neonatal Intensive Care Unit (NICU) at Amrita Institute of Medical Sciences for two months and had a turbulent postnatal period. He had an infection in his right lung and had to be on supplemental oxygen for extended periods of time.
I am a retinal surgeon and knew that Ishaan had all the risk factors for a condition called Retinopathy of Prematurity or ROP. In fact, I was the one who started the screening program for ROP at Amrita Institute of Medical Sciences and was hoping that my own son will not develop this condition. Premature babies are not born with ROP. Few of these babies tend to develop this sight threatening disease. Therefore such babies have to be screened by a retinal surgeon or by a competent ophthalmologist who is trained in ROP and its management. The screening is usually done within thirty days of birth. It was already July 15th and I was anxious. Ishaan’s general condition had not yet stabilized and Dr. Rajiv, the neonatologist finally permitted me to screen my son for ROP on 19th July; 46 days after he was born.
Screening for ROP involves dilating the eye with specially prepared eye drops. After dilatation, the ophthalmologist evaluates the retina using an indirect ophthalmoscope (an instrument used to see the inside of the eye). ROP is a disease of the developing retinal blood vessels and therefore the vasculature (blood vessels) of the retina is examined in detail to assess if there is any abnormal proliferation of blood vessels. If there are large areas of abnormal vasculature (called threshold ROP or high risk threshold ROP), then immediate laser treatment has to be done. Untreated, the disease can progress further and end up as irreversible blindness. No anesthesia is required for screening as well as treatment of ROP. The bottom line is that, this potentially blinding disease can be prevented if identified and treated in time.
Fundus / Retinal photograph showing a premature but normal retina. Note the absence of retinal blood vessels in the developing avascular retina (without blood vessels)
Cross section of the eye showing normal retina in the lower part and ROP (abnormal blood vessels) in the upper part
Fundus photograph showing abnormal vessels developing at the junction of the vascular and avascular retina
Being one of the very few retinal surgeons treating this potentially blinding disease in the preemies, the clinical signs I saw in my son’s retina send shivers down my spine. More than half of his retinas in both the eyes were without blood vessels. Besides, at the junction of the normal retina and the abnormal retina there were large, awry new blood vessels. And to make matters worse, some of them had already started to bleed! This can’t be true. I must be mistaken. My new born bundle of joy inflicted with ROP? It is not possible, I thought and sheer misbelieve, I looked into his eyes again and my worst fears were confirmed. Not only did he have ROP in both his eyes, but also had the most severe type of ROP – posterior aggressive ROP.
Posterior, because the ailment occurs close to the optic nerve leaving a large area of non- vascularised retina anteriorly. And because it has a large area of underdeveloped retina, the disease takes on a very aggressive course. I could hardly hold back my tears when I met Neethu outside the NICU. Even before I could complete what I had to say, I burst out in tears and was sobbing. She was stronger and was telling me that if it is ROP then he needs to be treated for that and that’s all. Was it as simple as that? Of course not! Usually ROP occurs in babies who are very small – less than 1250 grams at birth and born before 32 weeks of life (approximately before 8 months of pregnancy). They are not born with ROP but at least some of them, approximately 3 to 8%, develop abnormal proliferation of blood vessels and if not treated, half of these neonates will have retinal detachment and structural damage, leaving them blind for life. In these infants, laser treatment at the right time, corrects the abnormal development and restores normal growth of retinal blood vessels. But in extremely smaller infants – those born before 28 weeks of life (7 months), will have extremely premature retina and have a very severe and aggressive course. This disease can progress to retinal detachment in a few days and has been aptly termed RUSH disease. Therefore the odds of successfully treating my son’s ROP were dismally low.
I immediately called up Dr. Chandrasekhar Nooyi. Needless to say, Dr NC, as we affectionately call him, was responsible for me taking up the subspecialty of vitreoretinal surgery. He was a retinal surgeon par excellence and most of the time during my postgraduation at OEU Institute of Ophthalmology at Manipal, I was posted in the retina unit with him. I still remember our conversation on that fateful day. I could barely speak to him and my heart grew heavier with each word. I told him about the situation and requested him to come immediately to do the laser for my son. He too was struggling for words at that time. I guess none of us expected such an event in our lives. He then told me that he will not be able to make it as his father was in the intensive care unit and was critical. Further, he told me to go ahead and do the laser immediately. I tried calling Dr. Subhadra Jalali, my mentor who taught me the basics of ROP and with whom I spent many a day screening preemies for ROP at the NICUs in Hyderabad during my fellowship at LV Prasad Eye Institute. She too expressed her inability to fly down to Kochi for the laser and told me not to wait but go ahead with the laser. Both my professors had only one thing to say. Treat the baby as though he is someone else’s and treat him as early as possible. I still did not have the guts. What if I fail?
If I fail, I will have to follow up an unfavorable outcome the rest of my lifetime. More importantly what will I tell Ishaan when he grows up? All these thoughts were flooding my mind and I felt I could not do it. The strength then came from my parents and Neethu. My father, Dr. NSD Raju, now the President of the All India Ophthalmological Society, has been my role model and he is one of the top ophthalmic surgeons in the country and he knew that I needed all the support that he could give. And my mother kept telling me that there is nothing to worry. Her strength and courage at that time was amazing. I told Dr. Rajeev about the situation and told him about the need for laser immediately. Soon after, I was to hear yet another startling news. My son’s heart was not in a good shape and Dr. Rajeev was apprehensive whether my son, who was looking really frail, could withstand the procedure. It was risky. He requested me to wait for few days so that he can be sure of the baby’s general condition. On one side the eye is in a bad situation and delay in laser treatment can lead to permanent visual disability and on the other, the treatment of ROP at that time could be life threatening. I was caught between the devil and the deep sea. Finally we decided after hours of discussion that we will wait for couple of days, but I requested Dr. Rajeev to allow me to examine the eyes the next day. But the worst was yet to come.
It was a Thursday and I went to see my son in the NICU at about four in the evening – just about 24 hours after I had seen him earlier. If I thought Wednesday was bad, then Thursday was horrible. I could not simply believe what I was looking at. The entire disease process progressed so rapidly that new blood vessels started growing on the iris also. The iris is like a diaphragm in front of the lens. The pupil is the aperture in the iris which dilates and constricts to control the amount of light that passes through. New vessels growing on the iris is considered a very ominous sign and because of the vasculature, the pupil will not dilate well. If the pupil or the aperture is not large enough, then treating the retinal becomes a daunting task. Add to it the poor systemic status, it was hell. I told my father to take a look also. He too was worried. To make matters worse, the visibility of the retina also worsened with the progression of the disease. There was no time to wait. True to the description, the RUSH disease was rushing through its stages and we knew that it is not going to slow down. Left alone, the disease will destroy the eye in a matter of hours. But my son was still struggling to stay alive. His heart was weak and the infection in the lung was not under good control. The stress of the treatment could be detrimental. I could end up losing him. But if I chose not to treat him, then I will have a blind child who will have to live sixty blind years. But then again, What if I fail?
My father and I immediately informed Dr. Rajeev and convinced him to allow me to treat my son. He finally agreed and I set up my portable laser system in the NICU and waited for the NICU staff and doctors to get everything ready. That was the longest twenty minutes in my life. I sat down near Ishaan’s incubator. He was fast asleep and seemed not really bothered about the confusion happening around him. All the doctors and support systems were ready. All the monitors were attached and every parameter was closely observed. One major problem that can happen during laser is the irregularity in the heart rate. If the heart beats very fast, then it can cause heart failure. The heart can also stop during the treatment and can send my son crashing.
I looked at Ishaan’s face once more before I started the laser. This would be the toughest test of my skills. Once I started the treatment, I felt more at ease. Though it was tough to laser through the small pupil, something kept me going. The procedure took 45 minutes and was fortunately uneventful. The postoperative period too was uneventful and I took a look at him after 5 days. The pupil dilated well, the media were clearer, but the disease was still persistent showing no signs of regression. I went ahead with the second session of laser treatment.
A week later, we decided to move him out of Amrita. After two months of uncertainty, we finally had Ishaan in our arms. He was in his new dress, and of course well covered and then he was transferred to the NICU at Kolencherry. At Kolencherry it was a very pleasant experience. Dr. Krishnakumar Diwakar, the head of Neonatology was my teacher and always regarded him as one of the best neonatologist in the country. The NICU at Kolencherry is the only accredited tertiary level center in India. The care at the NICU was truly state-of-the-art one. The first step was to give Ishaan a good Kangaroo care. A baby Kangaroo is born premature and spends extended periods in the second womb – the mother Kangaroo’s pouch. So for human preemies, we need to make an artificial pouch to put the baby close to us. Ishaan’s response was remarkable after the Kangaroo care. His systemic condition started improving well and he was doing fine. I too got my share of giving Ishaan the Kangaroo Care. It was fun. But his retinal condition was still not completely normal. I had to device a method to capture the retinal images and send it to Hyderabad for a second opinion. So a new method of digital video recording using a digital video indirect ophthalmoscope and a Sony Handycam was devised and the images were sent to Dr. Subhadra Jalali. As per her instructions, a third session of laser was done. And finally after three sessions of laser, the ROP regressed completely and the retina was looking very good. He was discharged after a week and it was a joyous moment for the whole family.
Kangaroo Mother Care (KMC) can be done by fathers too!! Ishaan enjoys a KMC session by his father.
It was really exciting to have Ishaan with us. We were watching him grow and interact. Dr. Abraham Paul, the consultant pediatrician at Cochin Hospital was Ishaan’s doctor at Kochi. He was also closely following his development. It was through him and Adarsh that we met Ms. Dhanya, the neurodevelopmental therapist. She was instrumental in guiding us on various aspects of neurodevelopmental stimulation. During the first few years of a baby’s life, the brain is busy improving its connectivity or synapses. When the brain is stimulated electrical connections are formed – the synapses. The amount of neurodevelopmental stimulation the baby receives has a direct effect on the number of connections/synapses formed. And as in any learning process, repetitive stimulation strengthens these connections, making them permanent. Like ROP, this intense period of brain growth and network building happens only once in a lifetime in an individual, and as Dr. MKC Nair, the expert on neurodevelopmental therapy puts it, we get a brief but golden opportunity to help them stimulate the formation of brain circuitry. The techniques were simple and practical. We started with the baby massage, touch therapy, therapy for turning over and many more wonderful little exercises that Dhanya had advised. After 3 months, Ishaan’s retinal evaluation was done and we were relieved that it was looking good in both eyes. The response to laser was excellent. But even at 6 months, Ishaan could not keep his eyes straight. He always had a downgaze and could not look up. The head control also was not steady. So we made him lie down on his tummy and slowly moved a lighted toy (the simple star shaped ones with the button cells we get from the road side vendors), from his eye level upwards. This forced him to actually look up and lift his head. In addition, Ishaan also received visual stimulation using lighted toys, bright colored cards, toys and simple illuminated objects. It was so fascinating to see his response to these visual and neuromuscular stimulations. Another interesting aspect – more than 50% of brain’s sensory input is through the optic nerve, the nerve that connects the eye to the brain. Therefore I’ve always felt that all neurodevelopmental programs need to incorporate the vital component of visual stimulation. In Ishaan’s case, the combination of neurodevelopmental and visual stimulation helped him overcome the developmental delay and achieve the best possible result.
Most of the babies who develop ROP have other eye problems too. The most common problem is refractive error and as expected Ishaan had it too. We decided to correct it with a pair of spectacles. But he would simply refuse to wear them. At about one and half years of age he began to realize that wearing the specs gives a better vision and started wearing them regularly. Though it is difficult to quantify exactly how good his vision is, from the clinical tests and observations, he seems to have excellent vision in both eyes. His overall development was also very steady and under the watchful eyes of our neurodevelopmental guide Dhanya, he has improved quite well.
Dr. NSD Raju does the refraction for Ishaan to determine the power of the eye. Ishaan is seated comfortably on his grandmother’s lap while his mother, Neethu looks on.
We are also indebted to Sri. Neelakandan and Aswin of Adarsh for their continued support. Adarsh has been a part of our lives much before Ishaan and I think treating and caring for this wonderful group of children gives one, a sense of purpose in life.
Coming back to Ishaan, we are still keeping a close observation on his visual as well as overall development. He will need regular retinal check up through out his life to make sure that his vision is maintained and his refractive error is appropriately rectified. Now Ishaan is growing up fast and exploring the many wonders this great life has to offer. Many more eyes have been treated for ROP and many more babies have been screened. Fortunately all the babies I have treated have improved and have had favorable outcomes. When I started screening for ROP, the awareness of this sight threatening disease was low even among doctors and the favorite one liner of all the neonatologists at that time was “My babies don’t have ROP”. But now I tell them “My baby has ROP” and that I have treated him. And, I did not fail.
Ishaan is now 6 years and goes to Upper Kinder Garden at Chinmaya Vidhyalaya, Vaduthala. My mentor at school and former Principal of Chinmaya Vidhyalaya, Mrs. Kamakshi Balakrishna, Ishaan’s Principal, Mrs. Maya Mohan and his Class teacher, Mrs. Gita Menon say that he is doing well and is loved by all his friends. And his best friend Anvay and family adore him.
Ishaan led the Kochi Global Diabetes Walk 2008 on World Diabetes Day, 14th November. His enthusiastic effort caught the attention of World Diabetes Foundation and they have designed the Global Diabetes Walk poster with Ishaan’s picture. This poster has been on the stalls of World Diabetes Foundation at all the International Diabetes Federations annual meetings from 2009 – from Montreal, Canada to Dubai this year.
Ishaan leading a group of 1500 walkers at the World Diabetes Day’s Kochi Global Diabetes Awareness Walk. Anxiously looking on is Dr. Abraham Paul, Ishaan’s Pediatrician
Ishaan’s poster at the World Diabetes Foundation’s Stall in Montreal, Canada at the International Diabetes Federation’s annual meeting
Ishaan has mild attention deficit hyperactivity, which according to his doctor, Dr. Sekhar Sheshadri at NIMHANS, is because of extreme prematurity and Dr. Seshadri is hopeful that he will do well with appropriate training.
Ishaan’s refractive error is still a concern – he has myopia of -13 D in the right eye and -3 D in the left. Because of this large difference in power between the eyes (condition called Anisometropia) he is now being trained to use contact lenses. Otherwise, the right eye, because of its high power and resultant poor quality of image, will soon be ignored by the brain and will become a lazy eye (Amblyopic). Both eyes show an excellent response to laser and a near normal retinal status.
Ishaan has a liking for music, audiovisual gadgets and computers. Such children have an innate ability to excel in music, art etc., – Stevie Wonder – the blind American singer – he was blind from childhood – he had retinal detachment secondary to Retinopathy of Prematurity.
Ishaan still goes to Adarsh special school for need based training. His teachers -Remya, Sharanya, Binsy and Suja take care of many of his training programs including speech therapy and social skills.
Retinopathy of Prematurity or ROP affects few high risk preemies
A detailed retinal evaluation by a trained retinal surgeon or ophthalmologist and treatment by Laser at the right time can prevent blindness from this potentially sight threatening disease. TIME LOST = EYE LOST
These extremely premature children have associated problems like learning disabilities, refractive errors, squint etc., and at times require a multidisciplinary approach and appropriate training / medications for the normal intellectual and social development.
ROP is a PREVENTABLE, POTENTIALLY BLINDING DISEASE in Premature babies.
Stevie Wonder – the american songwriter and singer was blinded by Retinopathy of Prematurity (ROP). Though he was a prospective candidate for the artificial retinal implant, after extensive evaluation, he was ruled out as he had ROP. Thus ROP remains a potentially blinding disorder in premature newborns. If not detected and treated in time, few of these eyes can go blind.
Posted 2nd October 2009 by Biju Raju
Labels: eye free eye surgery laser LIO Neonate retina retinal Retinopathy of Prematurity ROP
19 View comments
Manish NagpalApril 18, 2013 at 6:03 AM
I came across this blog and article today somehow….
what an amazing courage and strength you and your family has shown through this whole experience… Surely sends shudders down our spines trying to be in your shoes. Its truly remarkable and my best wishes to all of you and i think the most important aspect of dealing with such situations is the need for tremendous family support and i think you have a wonderful family and i am sure Ishaan would grow up just fine…..wish you the very best Biju and have always enjoyed interacting with you …..
Biju RajuApril 19, 2013 at 9:29 AM
Dear Manish Bhai,
Thank you very much. Today I read this again. I really do know how I stood up against all odds. My father still says he couldn’t even see the disc properly due to small pupil and haze due to severe plus and he has no clue how I treated Ishaan that day. When I think about it, I am really confused. I guess, certain situations demand that one has to go beyond ones ability and limits. I knew that this was the last chance Ishaan had for a favorable outcome and the only chance that I had to save his sight. To me, even now I believe, the purpose of my life has been fulfilled. Otherwise, why did I take up retina, and why did I have to be with Dr. Subhadra and ROP work for a major part of my fellowship – I think everything has now fallen in place. I am now slowly getting back into retina work again, my focus is more clear and objectives are more defined. That why the new Technique of fundus documentation is very close to my heart. Till now I am yet to see such quality pictures of the fundus taken with a mobile phone.
Ishaan has been promoted to Ist standard. His ‘graduation ceremony’ was a joyful event for all of us. We are helping him overcome his learning disabilities and hyperactivity. But I am glad that he is normal and has reasonably good vision. The retina looks absolutely normal except for the peripheral laser marks.
Thanks Manish Bhai for all the support. You’ve been always wonderful to me, a big brother and a role model. Thank you!!!
BBMApril 19, 2013 at 7:19 PM
I don’t have words to express how i felt while reading this article . Without wiping the tears , i read the whole article. Friend , hats off to you.
All the best wishes to you, your little Ishaan and Neethu. May god bless you
Bindu B Menon
Biju RajuMay 1, 2013 at 7:58 AM
Thank you Dear Bindu!!
SeenaApril 19, 2013 at 8:40 PM
What you went through will definitely make you a better and stronger human being. Everything happens for good, but finding that good in that struggling time is the most difficult thing. This happened to you because you are very special to God. You are a winner. Keep up all your good work. Praying for Ishaan’s bright future.
Biju RajuMay 1, 2013 at 7:59 AM
Thank you Seena, my regards to Jerry!
alam medicApril 19, 2013 at 11:40 PM
hats off t you and rest of the family.this blog could be one day a readers digest article.i could imagine ishaan reading this one day and also his gratitude.i appreciate your resolve,determination and courage.
Biju RajuMay 1, 2013 at 7:57 AM
Rajesh PuthusseryApril 21, 2013 at 9:20 PM
after reading this , i feel like standing up and saluting you.crisis gives us the courage to face the worst of worst situations . you and ishan should be an inspiration to every one. proud of you, my freind
Biju RajuMay 1, 2013 at 8:00 AM
Thank you Rajesh!
Unnikrishnan CpApril 6, 2015 at 12:34 AM
“Treat the baby as though he is someone else’s and treat him as early as possible” ……You did it. The Hindu philosophy (non-religious) defines Yajna as ‘A work undertaken with selfless motive; hence, that brings desired results”. Yajna, if done (not just ritualistically, but being totally true to its spirit and vision) can bring fire, rain…and you have seen it can even cure ROP.
As you know, I am not superstitious person and trained science student. Yet, we do not deny ‘happenings’ that are not yet proven by material sciences. Infact , no science does ever say that ‘there is nothing more to search for’.
If you recall yesterdays session, the last part, ‘The benefits of involvement in Arts’, out of the 10, one is ‘Devotion/Commitment’. You have it for the reasons you and I am aware of. I believe this made you listen to your expert teachers and proceed without doubt. Thus success is inevitable.
You will still find many happy moments flying in all to erase the anxious days you and the rest had to pass through.
And, with the added knowledge from your blog, that Ishan was prematurely born I doubt whether he could be placed under ‘Classical Hyper Active’!! My strong belief is he would get over the symptoms as the new interneuronal connections (Learning and memory structures) get established. We need to give him an extra 60 to 90 days, for every task, till he is 12 + yrs. Please keep observing and informing me.
Biju RajuApril 6, 2015 at 8:38 AM
Thank you very much Sir, for a very reassuring advice and support.
I think this was THE YAJNA of my life. I had told Dr. Manish Nagpal, one of the top VR surgeons in the country and a very good friend of mine, that this was probably the purpose of my life. And I am sure about it.
I agree with you Sir. I see the hand of the Great Architect of the Universe in my work. When I operate a retinal detachment, I only reattach the retina, but I have no idea how those millions of cells start to communicate and function again…
I too think that Ishaan’s hyperactivity is not the classical ADHD type,,,and I share your believe that he will ultimately outgrow it. Your lecture yesterday was an eye opener and it has infused fresh hope. I changed my approach to his problems after the lecture. And I see immediate effect on his behavior. It was amazing to see that. What you spoke yesterday would have touched and changed every parents approach to their children.
Thank you Sir,
With Love and respects,
Unnikrishnan CpApril 13, 2015 at 8:10 PM
Thanks Biju. The Great Lord is kind enough to give us moments to speak out few words that would make big difference in some, somewhere. Let’s be ever grateful and serve the purpose for which we have been created.
Regards to All of You Fro All of Us
Prachi JoshiApril 6, 2016 at 4:19 AM
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Genies AlanJune 15, 2016 at 12:11 AM
Can I just say what a relief to find someone who actually knows what theyre talking about on the internet. You definitely know how to bring an issue to light and make it important. More people need to read this and understand this side of the story. I cant believe youre not more popular because you definitely have the gift.
cara mengobati bekas luka jahitan wajah
Cara menghilangkan Flek Hitam di Selangkangan
Cara Mengobati nyeri Lambung
Padmanabhan MelethNovember 17, 2016 at 8:12 AM
Incredible Biju. Cant even imagine the stress u were going through. When all others fail God will support u.
Majoe CamoensNovember 18, 2016 at 4:35 AM
Hi Dr. Biju,
I was deeply touched to read about Ishaan and admire the sagacity with which you handled the ordeal for Neethu, you and loved ones.
When I read that Ishaan still has health issues I immediately thought of spiritual healing where the Holy Spirit of God acts through the prayers of His anointed ones to heal people and circumstances.
My mother was bedridden for a year and in deep pain due to spinal compression and destruction of the nerves ( she is diabetic too) in 1993. She began to lose bladder and bowel control too. She was 69 years old then and in Bangalore.We brought her to Divine Retreat Center, Muringoor, Chalakudy. She was carried onto the flight in a wheelchair and taken to Divine by ambulance. At the healing service there that Wednesday she was asked to get up and walk and she did. That was a miraculous healing. Bowel and bladder function became normal and she continues to walk with the help of a walker. She was healed from the sever pain too.
In thanksgiving, I served as a volunteer there at Divine Retreat Center on and off, from 1994 to 1997 and saw and heard numerous testimonies of healing of all areas of life.
I’ll send prayer requests for his complete healing to them and others copying you if you send me your e-mail address.
Fr. Jose Vettiyankal too is a healer who is powerfully anointed by the Holy Spirit. I have witnessed the similar miracles and testimonies at his healing services at Logos Bangalore.
The links to these sites and testimonies of healing are given below.
You could go to there with Ishaan>
Thank you for sharing this with all of us. It inspires us too to timely action.
God bless Ishaan and his loved ones.
srinivas gangadharaDecember 23, 2016 at 7:49
Aloka HedauJanuary 17, 2017 at 1:30 AM
Dear Dr Biju
I am a pediatric ophthalmologist and do ROP work myself. Whenever we see babies so bad we always have this thought ‘oh God don’t do this to my own’ but the way you faced it and did laser with steady mind and hands in the worst rop scenario is commendable. God really plans thongs with purpose and your story reiterates this! Wish your son reads this one day and feels proud to belong to this lineage of courageous passionate ophthalmologists!!