When Vince was two months old and received his tracheostomy tube, my greatest heartache was knowing that I won’t hear his little voice, we won’t be able to talk to each other, and anyway, how will I wake up at night when he is calling me? But we fast learned to communicate with each other, only not through words. Everything was written in his eyes from the beginning, I just had to look into them attentively to find out what it as he wanted to say. Of course there has been a lot of guessing and still there is to this day, but we have such attention between us that excludes all superficiality, and I won’t let go until we understand each other. Vince learned to show yes and no with his head quite quickly. Even today, this is the surest way we communicate: I ask a yes-no question, and he shows the answer.
At the hospital they encouraged me not to worry, with time children will be able to speak with a tracheostomy tube as well. I never understood how sounds can come out if the trach presses the vocal chords to the wall of the larynx. But time showed this to me too. As Vince grew the tube got smaller, and every once in a while a little air escaped beside the tube, which was enough to vibrate the vocal chords. But these were very rare occasions. Because of Vince’s muscular adhesion, he couldn’t blow out air strong enough. He has also limited motion in his hands, so it is out of the question to close the opening of the tracheostomy tube, so in the meantime the air could escape next to the tube. Other children with trach speak like this. When they would like to say something, they simply block the air coming out of the tube, so that air is forced to pass the tracheostomy tube, vibrating the vocal cord, and finally exiting through the nose and mouth.
Vince was 3 and half years old when I found a Facebook group whose members raising children with a tracheostomy tube. They are called Moms of Trach Babies. The group has more than 3000 members, mostly Americans, but there are a few other families from England and other European counties. I saw the speaking valve here for the first time, which works by putting a little cap on top of the trach. This allows the air to flow in, but not out, so it is forced to escape beside the tube and exit through the mouth and nose.
Of course we immedately ordered this speaking valve from the US. We put it on Vince’s tube and he could give sound out right away. I remember I started crying I was so overjoyed. I recorded it and sent it to friends and family. I wanted to shout it from the top of the mountain that there is hope that one day Vince and I will have a conversation. By the way, in the US when I child gets a tracheostomy tube after birth, he/she receives this speaking valve at 2 weeks old, and by the age of 3-4 they are able to speak. If you are interested in people’s experiences with it, just type ‘speaking valve’ into a search engine and you will find thousands of audio and video material, plus all kinds of different companies that sell it.
Vince was 4 and a half years old when I was surfing on the Internet one day and found a Hungarian company that helps purchase these speaking valves with the support of the Hungarian National Insurance Fund (OEP). We only have to pay a small deductable. When we found each other I kept sending them thank you messages for everything, I was like a stray cat that finally got a bowl of milk at a house, and whenever he goes, there is always fresh milk there. J
By now, we have managed to get a cap that is not only a speaking valve but also an artificial nose, which means that besides giving sound out, it has the blessed effect of filtering out bacteria and humidifying as well. This cap is called speaking valve combined with artificial nose. These caps can be used one time only, and we usually put a new one at the end of the tracheostomy tube every day, so they can give real protection. If this is the first time you are hearing about this combined cap and would like to get it for your child, in Hungary you can contact this company: www.pro-klinimed.hu.
Vince received this speaking valve fairly late, at the age of 4. He has come a long way since then. Now he is able to say words such as Dad, Mom, and he has his own baby language. We looked for a speech therapist who could help him develop further, but so far we haven’t found anybody as there isn’t that much experience with tracheostomy tube here in Hungary. So we were left with the Internet again, where we found a speech program which was developed for autistic children. It is called Avaz. We downloaded it to our tablet and changed every pictogram to Hungarian pronunciation. Vince started using it immediately, and we have come a long way already! By now Vince is able to form full sentences with it, because he just needs to hit the pictogram, and the program places the picture into a frame, and by hitting the frame the program says the full sentence out loud. This is huge step forward in Vince’s communication, because now we can talk about not only things coming from my imagination, but I can see that he has his own thoughts. There is a lot of information about these speech programs on the Internet. It is important that he learns playfully, and for that we found Talking Tom the cat or Talking Ben the dog which help this concept perfectly. We can play with them, they have to be taken care of, and if during the game Vince gives out a sound, the animals repeat is.
To develop his ability to communicate, of course we keep teaching him the alphabet in any way we can (using cards, applications on the tablet, magnetic letters, etc.), and we hope that one day he will be able to type the words into the communicational aids on his own that he would like to share with others.
The next level of the speech process is when they remove the trach and help the child get used to breathing through the nose and mouth. This is the process of decannulation. This is done in the hospital, by plugging the trach, so the air can only get in through the nose or the mouth (after they have made sure via laryngoscopy that there is no blockage). There is a lot of information about this on the Internet. There is also a closed group on Facebook, which I haven’t looked up yet, only ready about in the trach group, but I know they are called Naked Neck Club.
