Daniel's Story Chapter 3.

3.3. Cramps

We can barely recover from the weeks in the clinic, then the next blow comes:
When crying, Daniel stops breathing! One day, it first happens out of the blue. We do not know what to do. Many babies hold their breath when crying, and so did Daniel. But when Daniel turned blue one time and he totally stopped breathing. His facial color got darker and darker. From blue to deep blue to violet. His mouth is open, but no sound comes out and his chest does not move! I shout at him "Daniel! Daniel!", I shake him, in order to get him out of what seems to be a vicious cycle of a lack of oxygen that leads to a kind of cramp that leads to even lesser oxygen in his blood. Nothing helps! Knowing that every second now is important, that every second now this cramp continues the risk of permanent brain damage increases, I do something out of reflex, without thinking: I blow a sharp stream of my breath into his nose and open mouth. This helps! His chest moves! He inhales and slowly returns to normal. I am so exhausted afterwards. What was that? Will this happen again?
We contact our doctor and tell him what occurred. Then, it happens to Daniel again in the presence of the doctor. My method works again, but the doctor is of course concerned. He gives us ampules with Valium. When Daniel gets a cramp we should empty one of the plastic ampoules into Daniel's rectum. Thus from now on, we carry a few of those ampules with us, wherever we go. One day we have to use one! It helps, since the drug is adsorbed very quickly by the mucous membranes, but the time afterwards is terrible. The dose of Valium is fairly high, so Daniel continues sleeping for 4-5 hours! All together he is knocked out for a whole 24 hours. What should we do?
In the beginning of April we go to the university hospital for a EEG checkup. Maybe the reason for the cramps can be found in his brain. Since Daniel is so vehemently against anything attached to him, just trying to fix the electrodes at his head ends in a disaster. He cries and cries and cries. The doctors see no other way and we agree to sedate him. It takes a very long time, until the injected drug works. This is another problem Daniel has. Sedatives do not work as they should. After half an hour he is asleep and the electrodes can be attached. Yuki holds him in her arm, but she is not allowed the smallest move during the recording of the EEG, because it would give some false spikes.
A few days later, we are given the results:
There is an anomaly in the left side of the brain, a so called precentro-temporo-parietic intermittent slowing. The damage can be caused by many things. Already present since birth, it was not effective until Daniel's shunt closed; a blood clot during, or after, the first operation that found its way into the brain; a viral infection, and so on. The list is long. Anyway, we do not care how he got it. He has brain damage! Since it is on the left side of the brain, it should manifest itself on the right side of his body. But the facial expression is symmetric. He does not have a limp right eye or cheek. His smile is as radiant as it was since birth. But now, when Yuki and I look at baby pictures of Daniel, we can see that he does not use his right arm as much as he does the left!
I examine his extremities carefully and I find that the right arm and leg are thinner and shorter than the left ones. This fact was left unobserved by the doctors for the whole time. It took me, a medical lay person, to find it out! But we hear also from other parents that sometimes unusual conditions are overlooked, because the doctors, and also the parents are fixated on the problems related to the heart. Compared with his severe heart defect, the retarded growth of his right extremities is indeed a minor disability.
Anyway, now that it became clear that his right side is underdeveloped, the doctors suggest that we consult a physiotherapist. We make an appointment and during the first session Daniel is, as expected, not happy about that another person takes his arms and legs to do gymnastics.
What is most efficient, the therapist tells us, is using a big inflatable rubber ball. Daniel is lying on it and by rolling the ball forwards he is using his arms in a reflex movement to reach to the ground. By rolling the ball slightly to the right, Daniel should be trained to use his right hand more.
We buy a big yellow ball with 45 cm diameter and continue the practice at home. But even with us, Daniel doesn't like the practice and we soon give up.

In his first year, Daniel learns to sit, but since he is so weak, he cannot crawl. He lies on the back, can turn around, and reach for his toys, but he refuses to crawl. Thus he always needs either Yuki or me when he wants to move or get something out of his reach. He is very demanding, and always somebody needs to be around him. Of course we are afraid of cramps when he cries, so we do what many parents with heart-kids do: do everything to stop him from crying, or even better, not make him cry firsthand. Of course this leads to spoiled kids, but who can blame us parents when we want to avoid our kids to slide into a cyanotic state?
Even though we are overly careful about Daniel, I think we still keep a good balance for educating him. Future will show that we did the right thing and found a golden way between over-protection and a more severe education..