Prayag : Rainbow after a Storm; Journey with CDH
Today is 28th September 2020; my boy Prayag turns two years old. It took me two years and a lot of courage to tell you all about his life. It has been such a long journey, but a wonderful journey. Today I am here to share my experience with my son which will certainly be awareness and at least would be a hope to somebody. I am writing this in the hope that people in similar situation will know what to expect after reading and hopefully be able to save the life of a tiny one.
On 1st of February 2018, me and my husband Sankar, were happy with the news of the arrival of our second baby. Our elder one is a five years old baby girl. We were leading a normal pregnancy apart from the normal health issues like nausea and dizziness. I am working as a lecturer and I am having a work life balance. I had all my health reviews on time along with suggested scanning. I had my anomaly scan at five months, which is done to check the organ development of the baby. It was perfect and the scan suggested that my baby was healthy.
The 7th Aug 2018, I still remember each and every event on this day. My seven month scan was scheduled this day. I was happy, as there was nothing much to worry. We both went for the scan and we were really excited to see the baby in the scan. The place where I was having scanning was a reputed one and offered the best service. During the scan, the sonologist asked whether the last scan showed any anomalies. I said “No”. Then I heard him saying something to his assistant like, “Heart displaced, left CDH….and so on”. I did not understand anything, but had a sense of something bad. The scanning process was quite long than normal and we had to wait for the results. I was tensed till we got the results.
When I got the results, I immediately read it. It was written as “Left CDH, Heart Displaced, Liver in the chest cavity and more.” The words written in the paper shattered me completely. I immediately searched for ‘CDH’ in Google. What I read has shattered me completely. The baby is Left CDH (Congenital Diaphragmatic Hernia). The Heart is displaced and organs too. “Congenital diaphragmatic hernia (CDH) is a rare birth defect in which a hole in the diaphragm allows the intestines, stomach, liver and other abdominal organs to enter the chest, impairing normal lung development.”
My family consoled me saying we will discuss it with our Gynecologist and not to be pessimistic. The same day we managed to meet our Doctor who gave us a clear picture of the same, but still I was feeling helpless. As informed, the prognosis of this disease is poor. We were not left with any other option rather than to move ahead with this pregnancy. Our Doctor also informed us that specialist care is needed and our baby cannot be delivered in a normal hospital. As adviced by our Doctor we met the Neonatal Wing of Amrita Institute of Medical Sciences, Kochi. Dr. Naveen Viswanath of the pediatric Surgery Department of the hospital explained all the pros and cons of the surgery that has to be undergone immediately after the delivery. It was a ray of hope for us. As per their advice, we again went for a scanning for the confirmation. I prayed for everything to be a nightmare. The results came to same. Now only thing that was left to us is to wait till the baby mature to maximum so that his lungs may develop which would help him have more chance to survive. We had to consult the Gynecologist in AIMS as the baby could be delivered in this hospital itself, as we wanted the best NICU and specialist Doctors to save our baby.
By now, I was slowly trying to figure out the situation with the support of my parents and family. At the same time I was still working and was not able to reveal anything to anybody. I didn’t want anybody to know this. In the midst of all these, like a nightmare our state (Kerala) was badly affected by floods. All the roads to the hospital where we are supposed to have my delivery was closed and I am nine months pregnant. This added pressure to our situation because nothing would go as planned if we had to deliver our baby in any other hospital. But God has had different plans for us.
Due to the mental and physical pressure I lost weight by then which also affected the baby. On consultation the doctor suggested me to be healthy and happy so that it would also help the baby to develop. Ideal birth weight is also crucial. My days and nights passed reading stories about CDH babies. This helped me so much in instilling hope. Also I was equipped with my official duties. I tried to figure out cases from India, but only two three people wrote about this. Then I realized the importance of an awareness campaign for CDH.
Arrival of Prayag
The days passed and my C Section was planned on 28th September 2018. I had my elder one through a C Section. This time also C Section was planned as the baby needed to put on ventilation immediately to avoid complications. I clearly remember each and every day before the birth. I was admitted a week before the c section. My operation time was fixed by 12.00 pm. All the preparations were done that night itself. By morning I was waiting empty stomach for the operation. By 12 I was shifted to the operation theatre and everything started. I was given an anesthesia on the backbone. I don’t think I will ever get to forget those hours in my whole life. By 12.30 pm the baby was taken out and I heard it crying aloud and immediately it was shifted to ventilator and taken to the NICU. I started to have a sense of shivering by then, may be because of the local anesthesia or high temperature in labour room or may be because of my mental condition. It took an hour or more to complete the procedures and to shift me to post-operative ward. Everyone seemed to be tensed in the operation theatre. I was put on oxygen, hence I did not have an option to ask anybody about my baby, or whether it is a baby girl or boy or about the baby’s health. Finally a nurse in the post-operative ward informed me that it is baby boy and he is in the NICU. And then my family came to meet me and spoke to me about the baby and how is he shifted to NICU and all. But still it is depressing to see every mother in the NICU with a baby next to them when I could hardly see my baby’s face. I saw my baby for the first time exactly after 24 hours after delivery and then I had a hope that he is already a fighter, because most of the CDH babies does not make it till here.
Next Phase
Prayag was in the ventilator post-delivery. His surgery was postponed due to low blood pressure. Every day we would wait for the doctors to say whether his surgery is fixed. But the doctors said it is not possible with a weak blood pressure. We used visit the NICU and see our baby with lot of tubes and machines near him. We could only see a small patch of his forehead and chin and we would touch his arms and toes. The rest of his tiny body was covered completely. We return with a hope that everything would be fine. On October 1st 2018, I was discharged from the hospital but baby was still in the NICU. We were provided with rooms in the next building just beside the NICU so that we may be available on demand. On 4th Oct 2018, the surgery was scheduled but suddenly it was cancelled for low pulse rate. That day I could not resist myself. I lost hope and was completely traumatized. Finally on 5th Oct 2018, when I went to see him as usual, I was informed that his pulse rate is marginalized and normal now and is taking him to Operation Theatre. I was equally tensed and happy, tensed because I didn’t know anything about it and happy that he is in safe hands and I will get my baby back.
We waited for hours in front of the OT. He was shifted back to NICU and we could see him there. The Doctor informed us that it was a laparoscopic surgery and there is nothing to worry as Prayag’s condition was not as severe as scan revealed. There I sensed the power of Prayers. They also told us that all the organs were properly placed back and he will be perfect in days.
After surgery we could see him every day with changes. We were happy when the Dr. Lakshmi (Prayag’s NICU Doctor) informed us that his support could be removed, this medicine has been discontinued and so on. We spent a couple of days in the hospital when our baby slowly weaned off from oxygen support. On 23rd Oct 2018, Doctor informed us that our little fighter is perfectly fine and we can take him back home. I got to hold him in my hands for the first time on this day. Most mothers out there would know how it feels to hold your baby for the first time. I cannot describe what I felt holding him after waiting for a month after undergoing all these pain.
Back Home
Prayag was bought home on 25th Oct 2018 after having finished all the vaccinations and procedures. He was having low blood pressure and was adviced to give salt along with milk orally. Other than that no medicines were needed. Apart from “no visitors”, no other precautions were suggested. It took long time for me to adjust myself to the situations. I would stay awake all night to check whether my baby is okay. It was my habit at least for 8 months. We had regular reviews every month and the baby’s pressure and blood tests were examined. On the last checkup when he was one year old, our Pediatric Surgeon surprised us with news that Prayag is perfect on development and no more checkups are needed. We were on the top of the world.
We named him Prayag which means Rainbow after a storm. He is really a rainbow after a thunderstorm. Today, when he is two years old, I am proud to say that my little boy is truly a Fighter. Thank you so much to all the Doctors and the support system in AIMS, Kochi, Kerala. We had family, friends and lot of people to support us mentally, physically and financially all throughout the journey. I cannot thank them enough as it means a lot. I am not a good writer but I tried to narrate my experience. Its not an easy journey but the hardships are worth enough. I have had sleepless nights and tiring days but when my Prayag smiles at me, I feel so contented.
I am writing this now because I have searched for experiences all through the internet to have a hope, to have ray of light. I didn’t have anybody to share my doubts. Now for this cause, I am trying to initiate a CDH awareness Campaign in India. We are part of a group to have awareness campaigns and make people aware of this disease, its diagnosis, and treatment. I share my experience because there is nothing impossible.
I am grateful for reading my experience. Do share, please, as this will support others. My aim is achieved if my experience will benefit others.
Email: [email protected]
References:
1. https://fetus.ucsf.edu/cdh
2. http://www.cherubs-cdh.org/
3. http://www.amritahospitals.org/SpecialityDepartments/Neonatolog
Note of Thanks:
Dr. Beena Kumari, Gyneacologist, City Hospital Ernakulam
Dr. Perraju Bendapudi , Department of Neonatology, AIMS, Kochi.
Dr. Naveen Vishwanath, Department of Peadiatric Surgery, AIMS, Kochi
Dr. Lakshmi S Nair, Department of Neonatology, AIMS, Kochi