Kirit, Chug and Amar This page is fifth of the set of Personal Stories of Type I babies.

Christmas and New Year were the best ever! Although Amar was only a month old, we felt that his presence made the whole festive season worthwhile - as if it was made for him. Even at this stage, we had no idea of what was going to happen, although we did notice that he seemed quite lethargic in his movements. It was in January 1996 that we decided to see our GP regarding Amar's movements - or to be precise, lack of it. As soon as our GP saw him, I could see his expression turn to an extremely serious look.

Our GP, Dr Smart, is a very caring and understanding doctor, and for him to have such an expression made us anxious. We went to Wexham Park Hospital immediately, and after some investigations we were told to take Amar to Hammersmith for further tests. We have to admit that our experience of Hammersmith was not a good one. Perhaps it was the way we were, or maybe it was the way that Amar was treated. Anyway, having spent hours on end there, we were finally advised that a muscle biopsy would have to be made on Amar. He had just had injections in his arms, and now it was his leg! The following week, the nurses had no choice but to give him his next set of jabs in the other leg! Bravery? He was a saint!

The second worst day of 1996 was March 1st, just two days before my birthday. We had waited six weeks for Amar's biopsy results and I was praying for the best birthday ever. It turned out to be the worst. The medical staff confirmed that Amar had SMA. I now recall why Hammersmith was an experience to forget. The consultant who had to break the news to us, mixed up Type I and III, we were led to believe that Amar had the mildest form of SMA. Only after questioning his reasoning did it his us that Amar was bracketed between Types I and II. How do you think we felt? Having spoken to other parents, who have confirmed the same type of experience, you can imagine the anger, hurt and sadness we were going through.

Amar never cried for the sake of crying. We felt even worse when we looked at him, his smiling face asking us to pick him up. Did he know? Did he hurt? We will never know, but will have to live with it. We were determined that Amar would have the best time we could imagine. However, along every avenue we explored, there appeared to be more hurdles. No one would give us travel insurance and therefore, we couldn't take Amar to Disneyland. No one around us understood the problem. There appeared to be a 'blind optimism' that he would get better. We were the guiltiest of them all, but as parents, what else could we do? He was a fighter ... with courage; at least we should emulate that. Despite all of this, Amar gave us a lot of happiness. We took him on a farmhouse cottage holiday and he loved it! We loved it! Both my wife and I were determined to give him the best, and to make sure he was happy. He even reached his first birthday, which even though he was ill, was a milestone, ... a tribute to his courage and bravery.

We never complained about the sleepless nights, possibly three hours of sleep a night on average. My wife stayed at home with Amar all day, every day, until I came home from work in the evening. He stayed with me, so I could give Kirit (my wife) a break. We were committed and got used to it, and enjoyed it, even though it was hard. We never complained. We coughed every cough for him; we wanted him to stay as well as possible.

Amar passed away on December 17th in the evening. He was with us at home and died in our arms. This was the worst day of 1996. We tried to revive him, but all in vain. He had done his time, touched everyone's heart, made grown people and children alike laugh and now cry. The whole family was devastated. If March 1st was like an exploding bomb in our faces then December 17th was the end of the world. We had never left him with anyone in his 387 days with us. We were always there, and now December 17th was the first night he was away from us, and we could do nothing about it. Why?? Why? Amar had never hurt anyone, never cried, always smiled, and never had a chance to complain. So why? Why do we yearn to hold him again? Why do I feel like wrapping him up, holding him, and running forever, never looking back? We miss him so much.

We had no problems looking after him. All we want is him. We can't and never will. All that's left are tears, photos, films and good memories. The period from March to December was filled with some anxiety; the not knowing what's going to happen next syndrome was with us every day. When would I see his last smile? - His last glance? - Gurgle? When would be the last time he plays with us? But most of all, when would be the last time I hold him? To live with these thoughts every day - anxiety! All that is left are memories and an empty house.

Finally, I would like to say one last thing. Amar was special to us, and the family, and he always will be. I'm sure there are lots of others out there who may relate to this. If not, then this is another experience for everyone to understand, and if anyone does relate to this, please don't feel alone. There are people, others, who have gone through what you may be going through. Both Kirit and I are in tears writing this.

Most of all, understanding the situation and talking to each other will help you to become stronger. Don't let anyone ruin your lives, the 'little people' are special, the 'little SMA people' are precious. Look after them and they will make sure you have a wonderful time.

Comfort

•   When Amar had a cold, to help him breathe easily at night whilst he was asleep, we used to put a few drops of eucalyptus oil on a flannel and leave it near Amar's pillow. You can buy this oil from Body Shop, but make sure it is diluted down, so that the vapour is not too strong for a small child.

•   Amar breathed better when held upright. I used to hold him upright and walked around with him, whether it be when shopping or around the house, etc. The upright position allowed Amar's chest, throat, etc. to remain as straight as possible, thus allowing better breathing. It also allowed gravity to play its part on relieving secretions from his nose.

•   We used to rub Amar's face every now and then. We realised he couldn't do it for himself, and noticed that able-bodied people unknowingly rub their own faces, eyes, mouth, etc. for comfort. We felt this must have given Amar a pleasant sensation.

•   Kirit made a beanbag for Amar to sit and lie on. We bought foam and small polystyrene balls and Kirit sewed the bag with the balls inside. This was the most comfortable place for him to sit. We found that all other seats were too upright, which made him slouch, and as a result did not allow him to breathe very easily. We took the bag with us on holiday and it proved to be extremely useful.

•   We had three very thin pillows to support Amar while he slept. We discovered five different positions for him to lay, and found that he was comfortable when he was moved from one position to another. The pillows were arranged so that one was under his head, and two placed either side of him in a semi-vertical position. His sleeping positions were: on his back, on his right side and left side, half way between flat and right, and half way between flat and left.

•   We also found that a small thin pillow in Amar's pushchair helped him to stay comfortable. He was generally upright and it helped him to see all the things around him. We felt this stimulated him and made him more excited as he saw different and new things. As he got more poorly, we found that he couldn't sit in his pushchair. At this stage, we used a pram to take him everywhere that we went.

•   As Amar was unable to sit, we found the upright feeding chairs were not suitable for when we were feeding him. We then found a feeding chair that reclined into different positions and had a feeding tray attached. This made it a lot easier to feed him, as it left both hands free, which was not the case before - as we had to hold him.

•   There were quite a few innovative ideas that we found were suitable for Amar. As SMA Type I children find it difficult to swallow solids, we found the following of great benefit.

•   Watered down fromage frais, yoghurt, or any other thick foods made it easier for Amar to swallow.

•   Kirit maintained her commitment to puree fresh fruit for Amar. She would boil apples, pears, etc. until the fruit became 'just soft'. After this, she put the fruit and juice through a sieve to make the puree. You can mix the puree with plain yoghurt or custard, or have it on its own. The consistency can be adjusted to suit, by just adding boiled water.

•   When travelling, we found that sterilised water in small bottles, obtainable from the hospital, were useful. The size allowed better space management, and the water was sterilised, thus reducing the chances of impurities in Amar's diet.

•   When Amar got quite poorly and had to be fed through a nasal-gastric tube, Kirit's father made a clamp to hold the feeding tube. This was very useful, as it allowed his drink to pass through the tube, and kept our hands free to allow us to play with him while he was being fed.

•   There were many occasions, in fact nearly all our time with Amar, when we played with him to keep him and ourselves as happy as we could. We used the everyday activities of his bath time, his exercises, physio, etc. as a fun time.

•   We both used to exercise his legs and arms by making stretching movements. We used to sing nursery rhymes and used sports commentary whilst exercising him.

•   We bought many helium filled foil balloons for Amar. We tied them to his wrist, and he used to look at the balloon and found it fascinating when he discovered that his slight movement could move it. We felt that this was a stimulant for him.

•   We tied different coloured ordinary balloons to a tree in our garden. Whenever we were in the kitchen, we used to face Amar in that direction. As the wind blew, the balloons moved and he used to find it fascinating.

•   We found that lightweight toys were obviously better for him to play with. Also, the toys had to be small enough to be held by smaller hands. We bought Amar plastic sandcastle moulds - different colours and shapes. We have kept his favourite one, a green seahorse mould that he always played with.

•   We used coloured ribbons, tinsel, Christmas fairy lights, baubles, etc., which we stuck to walls. We used the Christmas tree and fans, etc. to keep his stimulation going.

•   Amar also enjoyed music. We bought him 'wind-up' television toys that played different tunes as the pictures rolled on the 'screen'. Both sound and vision, with lots of colour thrown in, proved to be a stimulant.

•   Kirit used to hold Amar and dance with him to all types of music. Once again, the different movements, music, sounds, etc. were great stimulants and fun.

•   We also found that blowing bubbles was very good for stimulation.

•   There are a lot of useful tips that we found - some accidentally, and others through knowing what Amar liked.

•   As Amar became dependent on nasal-gastric tube feeding, we found that having spare sets at the homes of most frequently visited friends and relatives was useful. We also kept a spare set in the car - just in case.

•   Make sure that there are spare nasal-gastric tubes at your own home too. These items are not generally kept at hospitals and have to be ordered since they are not used as often as other items. A spare set ensures some peace of mind - we were unfortunate to have a few bad experiences.

•   Learn first aid. It teaches you not to panic in situations that are normally extremely stressful. It also acts as a useful skill for general use.

•   Keep a small, hand-sized oxygen cylinder at home, as well as in your car. These are very useful, due to their portability. Be warned that you have to ask for these, as hospitals are very reluctant to part company with them.

•   Perform physiotherapy during the day, and if needed, during the night to aid better sleep. Although it is difficult getting up in the middle of the night, the benefits of having two or three hours solid sleep will be appreciated in the long term.

•   As parents, make sure that you both look after each other. If one were to fall ill, this would put greater stress and strain on the whole situation. Be patient and remain strong for each other.

•   Tissue paper rolled up to the size of a pencil allowed us to 'attach' secretions from Amar's nostrils. The action of turning the tissue ensured more and more secretion to be deposited onto it.

•   If you decide to go on holiday, ask your consultant to write you a letter explaining your situation. It gives you peace of mind, just in case you have to go to a local hospital. Since SMA is very rare, a simple explanation to medical staff could save time and repetitive questions being asked.

•   If you do go on holiday, make sure that you check where the local hospital and doctor are. Make sure you know the route or a local mini-cab number, just in case.

•   If you are planning to go on holiday abroad, please note that there are no insurance companies that will insure you if your child is diagnosed as having SMA Type I. Many, in fact nearly all, airlines require disclosure and, in the long run, will not cater for your needs, such as having ventilators on board. We were extremely disheartened by this when we decided to take Amar to Disneyland and found that no one could help us. Nevertheless, there are many nice places in the UK that can equally allow you to have a break - we went to Devon for a week.

•   We managed to get referred to the Royal Homeopathic Hospital in London to see if there were any remedies that they could provide. We felt that the medication they gave to keep Amar's chest clear of infection was a great help. He was not 'drugged-up' with increasing levels of antibiotics and was rather more comfortable taking a couple of drops of natural ingredients, rather than spoonfuls of amoxycillin.

•   At bath times, Kirit used to sit in with Amar to give him support. Amar loved being in the water, as it helped him to move a little more easily. With Kirit in with him, it allowed us to fill the bath with more water than usual, and therefore, allow him to feel new experiences of his body under water.

•   Amar always had a massage with almond oil mixed with a couple or drops of lavender oil. This helped him to relax. We also used to put some eucalyptus drops into the bath, as it helped Amar to breathe more easily when he had a cold.

•   We found out that you can get a full size bath, which is shallower than normal, but fits onto the bath. This made bathing a lot easier, as there is less strain placed on your back.

© JTSMA February 2000