It’s life as usual for children with tracheostomy

By Kumudini Hettiarachchi, Pix by M.A. Pushpa Kumara

Babes in arms, toddlers and older children all with small bandages on their necks….but laughing, singing, dancing, crying and talking. The children in their party-best accompanied by their parents are completely at home in the simply but beautifully decorated auditorium of the Lady Ridgeway Hospital for Children in Colombo….little touches done with care by the staff of Ward 12.

Leaflets are distributed, dance and song items performed by the children themselves, small gifts given to each and every child, while a table laden with food awaits the conclusion of the session.

The events are interspersed with live demonstrations on how to “take care of the tube and how it can be changed"……..for it is Home Tracheostomy Care Day being celebrated for the fourth consecutive year at the Ear, Nose and Throat (ENT) Unit of the LRH.

A live demonstration on of how the tube can be changed.

Health education also follows with advice being given in easy language - remove the secretions in the tube before feeding the baby, otherwise he may vomit; don't use a plastic bib, only a cloth one; if it is a baby breastfeed her, otherwise give normal food but avoid pulses; when bathing the child make sure that water does not get into the tube; under no circumstances should a child go for swimming or take a shower; and if the secretions turn yellow or greenish, have an odour and the child has fever see a doctor immediately and bring the child to the LRH.

It is indeed a cause for celebration, for as Consultant ENT Surgeon Dr. A.D.K.S.N. Yasawardene points out till recent times children who underwent tracheostomies had to make the hospital ward their home for months and years. "When we were medical students, there was a separate children's ward for those who had undergone these operations. They couldn't go home. Life had got disrupted for the whole family."

That was not too long ago. Between then and now, what has changed so drastically to improve the lives of not only the children who undergo tracheostomy but also their families?

The quality of life has changed because these children can now go home and lead a normal life with their family. They can go to school and take part in most activities.

Such a celebration also makes the children feel that there are others too like them, dispelling any misconception they may have that they are different, it is learnt. Here "veteran" parents help the novices, supporting each other.

What is a tracheostomy?

A tracheostomy is a hole in the neck that allows people to breathe. The hole goes directly into the trachea (windpipe) and connects to the lungs, Dr. Yasawardene tells MediScene, explaining that a tracheotomy is the surgery performed to get such an opening.

Dealing with who would need a tracheostomy, he says babies with birth defects that affect breathing, have noisy (stridor) breathing caused by a soft or weak breathing tube, have bronchopulmonary dysplasia or have been on a ventilator or respirator (a mechanical breathing machine) for a long time, having had a plastic breathing tube from the nose or the mouth connected to the ventilator and may have had their mouth and throat, including the voice box damaged.

Sometimes it is also required if a person is unable to breathe because of a throat blockage or facial injury. "Then an emergency tracheostomy is performed," he says.

How is a tracheostomy performed?

A surgeon makes a small cut in the neck of the patient, after he/she has been put under general anaesthesia, followed by another small cut in the trachea. Then a plastic tracheostomy tube is placed, the size depending on the child, with the opening of the tube jutting out of the neck. This allows the child to breathe through the tube instead of the nose and mouth. A flexible strap around the neck holds the tube in place, says Dr. Yasawardene. The procedure takes less than one hour.

The hole can be short or long term, he says, with surgery being done to close it if it is not needed. "Although a tracheostomy prevents the patient from speaking, there are caps and valves that can cover the opening of the tube so that the child can talk," he adds.

Dr. Yasawardene

Nirupa Chandima Madhu keeps Nishan Prasad on her lap. Soon after the baby was born he began gasping for breath and she stayed in hospital for 1 ½ months, scared about the insertion of the tube. But now cleaning it and looking after her nearly-three- year-old son is a matter of routine, while he is like any other naughty toddler.

The fears are no more - the tube is to be removed in January. It has been a similar experience for Dilupa de Silva who says her little Kavinda never slept at night, but as soon as he dozed off would wake up crying. She too was worried but after the tracheostomy was done in 2007 and she was trained how to look after him, it has been fine for both mother and son.

Nallathamby Thangarajah has travelled with his five-year-old son all the way from Norwood. As both he and his wife are working, she as a tea plucker and he as a labourer, it is the grandmother who looks after Pavithran.

And they live in a home without electricity, which is needed to power the suction machine used by parents to extract secretions from the child's throat. How do Pavithran's parents do it? They use a foot-operated machine provided free of charge by the ENT Unit.

Among those wearing the neck bandage were also blue-uniformed children without the bandage. Along with their Principal Mrs. Chitra Weerasekera, they were from Belvoir College International, Milagiriya as they have been lending a helping hand to needy parents to support children who have had tracheostomies.

These children need several equipment at home including a suction (vacuum) machine to remove secretions. LRH has provided these expensive machines to children whose parents could not buy them. The staff and parents of Belvoir College International and other well-wishers had donated this equipment to commemorate World Children’s Day.

Integration important

Don't isolate the child who has undergone a tracheostomy, urges Dr. Chamila Wijesinghe, Senior Registrar in ENT Surgery, stressing that the child must be integrated into society.

Otherwise, by the time the tube is removed the child would have developed a complex. "Give the child attention, not because you feel, incorrectly, that the child is a victim, but because you have identified the child's strengths and appreciate them,” she says.

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