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Wednesday, April 17, 2002

Little hero

Caring for a newborn is a demanding job as it is. But when the baby arrives 12 weeks premature, the going can get really tough. CHAN LILIAN shares her experiences of coping with baby Vincent, born with chronic lung disease, who has pulled through one hurdle after another.

BORN in the wee hours of Sept 24 last year, Vincent Loh Yet Aun’s arrival has brought so much joy to our family. He is one lucky babe because he has three adoring big brothers and parents who have learnt to love beyond boundaries. Over the last six months, Vincent has grown into a chubby, adorable baby.

I should have been the happiest mum on earth, if things were all rosy and smooth-going. But Vincent was born 28 weeks pre-term, weighing in at 1.45kg. He has pulled through many hurdles since. Many pre-term babies would have gone through similar hurdles, but I wonder how many mothers have witnessed their little babies stop breathing in front of their eyes, not once or twice but many times.

I could cope when he had apnea spells in the first month when his brain forgot to tell his lungs to breathe. I would happily tickle his soles and knock on his incubator to wake him up. It became a challenge for me to detect an apnea spell coming and hide these spells so that the nurses would not record them for the doctor’s reference.

I could cope when he gagged and stopped breathing two days after he returned home from hospital when he was two months old. Giving cardiopulmonary resuscitation (CPR) to him was part and parcel of caring for a pre-term baby.

I could still cope when I saw my little chubby, pink baby turn blue and sometimes black when he was agitated. Many times, I was alone with him and I would put him down in bed and start thumping his chest until his breathing returned to normal.

I was never afraid whenever he had such spells even though his eyes would glaze over and he looked like a zombie in horror movies. I was still able to joke when his tongue sort of rolled out of his lips. I had the courage to face these frightening situations because I thought he would overcome them as he grew bigger.

But what really shook me up was when, last month, Vincent stopped breathing and turned white and limp right in front of the doctor. Looking back, I wonder how I could still remain level-headed enough to help the nurses search for the resuscitator to revive him.

I called his name and stroked his soles to bring him back to consciousness. For a fleeting moment, I felt the fear of losing him, but deep in my heart I knew that my tiny hero would not quit. He had so much love and security from his brothers and parents waiting for him. I was confident that baby Vincent would endure all the pain and discomfort that he was subjected to. Baby Vincent would continue his brave journey to grow into another spoilt brat of mine.

Just when I thought things were going smoothly and I had finally come to grips with the ups and downs of taking care of a premature baby with BPD (Broncho Pulmonary Dysplasia or chronic lung disease), we were dealt another blow.

Vincent was diagnosed with pulmonary hypertension a few weeks ago. (Pulmonary hypertension is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery – the blood vessel that leads from the heart to the lungs – rises above normal levels and may become life-threatening.)

The neonatologist treating Vincent told me that dealing with a baby like Vincent could be a long, slow process. At times, it could be a very lonely journey. I could not agree more. There are times when the only persons I want to talk with are those who can converse with me in languages like SPO2, FIO2, respiration rate, ventilator rate, bronchospasm, CBC, PDA, ROP, NEC, etc.

I find solace in the Internet where I can surf to gain more medical knowledge and get connected with other parents dealing with BPD. Vincent’s doctor joked that I could qualify to go to medical school with the amount of information and materials I have to digest.

Based on the information given by a few paediatricians whom I have spoken to, I am sure there must be some parents who have gone through what I am going through. In the meantime, I shall take each day as it comes. I pray that my baby Vincent will go on braving every obstacle – come what may.

Chan Lilian would like to get in touch with parents who may have gone through similar experiences. E-mail her at ejloh@tm.net.my.

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