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Daniel's Story Chapter 2

2.2. First Operation

April 13, 1990, Good Friday
We are at Daniel's bed in the morning, when a doctor approaches us and tells us "last night the Ductus Botalli closed a couple of times and the oxygen saturation in his blood dropped to dangerous levels. We could open it again with medication, but we have to operate today."
It turns out that they plan to do a so called 'shunt operation', in which a Gore-tex tube is placed between one of the Aorta arteries and the right branch of the Pulmonalis. This artificial connection will play the role of an open Ductus for the next few years of his life. One important question is the size of the shunt. It is too small, not enough blood flows to the lungs and the blood vessels in the lungs cannot develop. If the shunt is too big, too much blood flows into the lungs and a very dangerous high blood pressure level in the lungs can develop in the long run.
"After a shunt operation, we give Daniel the chance to become bigger and stronger. Then in the future, it is possible to perform a correcting operation." He tells us.
"Why don't you perform a switch operation right away? I have heard that this is possible now, even for newborn babies?" I ask right away.
"Because Daniel would die. He would not even wake up from the anaesthesia, in my opinion." the doctor replied.
"So you really can't do it?" I seem not to understand and ask again. "This would save Daniel the next big operation, if you do it right away." I should know better that the doctors have the knowledge and experience in this case. There is no bargaining, nor any room for negotiation.
"As I told you, he would not survive. You have to understand that."
Then he continues:
"Before we start the operation, we have to tell you about the complications and you have to sign this form." Then follows a list of risks and possible complications during the operation. It is a long scary list:
bleeding, blood clotting and migration of blood clots into the brain, allergy against drugs, sudden heart arrest, risk of catching hepatitis or AIDS if they have to transfuse some blood (at that time we learn that Daniel has blood type B), and so on. We have no choice, but to sign.
After Daniel is transported to the operation room, the waiting starts: we are in the small counseling room and wait and wait and wait. Why does the operation has to be on Good Friday? This is the day Jesus Christ died on the Cross. Is this a bad omen that our son will die too?
At the wall I see a poster of the Kinderherzliga (Children's Heart League). A phone number at the bottom gives the local contact information for the parents group in Mainz and surrounding area. I decide that I will call them later that day.
After 4 hours we are allowed to see Daniel. He is even more plastered with drips and sensors than he was before. He comes incubated from the OP theater and a breathing machine makes his chest move periodically. He will stay sedated until the tubus that connects him with the breathing machine  is removed, because being awake his own breathing would interfere with the machine, they tell us.
To our surprise the cut is not in front of his chest, but reaches from his armpit to the spine on the right side of his back. It is covered with thick bandages and only a few weeks later we are able to see it. Five cm below this cut, two drains allow the fluid from the wound to exit.
We decide that we can't do anything anymore and leave. We know that Daniel is in good hands.

The days after the operation
I drop Yuki at the Hildegardis and drive home. Then I dial the telephone number and speak to a Mr. Mueller. I tell him how I saw the poster and that our just born baby already had a heart operation. (Actually the shunt operation was not a heart operation, but an operation on the vessels near the heart. Thus he didn't need any blood transfusion nor a heart-lung-machine during the operation). Gerhard tells me that I am an exceptional case, since most parents do not call directly after learning of the heart defect of their children. Normally the shock is too great and they do not know what to do.
For me, it is just the opposite. I am being as active as possible when I am confronted with a new situation. I try to get every piece of information that is available, because I feel more secure when I know what is the situation and I can trust my judgment. I live by the the motto that 'information is harmful only to those who don't have it', thus I decide to learn what I can about hearts. Since we have several friends in our church that study medicine, I have access to primary information and books about congenital heart diseases.
During the next days, Daniel is getting better and better. I ask the doctors and nurses all the time "what is this drip for?" "What kind of medication do you give him now?", and so forth. The staff at the hospital is very friendly and answer all my questions in great detail and do not make me feel like I am a burden to them by being so persistent.
Five days after Daniel was born, a very memorable day comes. He starts drinking. Via a tube through his nose that reaches his stomach, he gets 1 ml (one milliliter) of Yuki's milk! One milliliter, that is less than half a tea spoon full of milk! But for us it is like seeing Daniel eating a five course dinner. The next day it is three milliliters at a time, severaltimes a day. Then it is more, and the small 10 ml syringe through which the milk is infused has to be replaced by a bigger one.
All the time he gets Yuki's milk. This is a great comfort for us, especially for Yuki, since this is something she can do for Daniel. I envy her for that. On the same day he starts drinking, the nurse asks us "do you want to hold Daniel?", Of course we want, but as we thought that it would be impossible, we didn't dare to ask on our own. With all the drips and tubes, and him freshly operated on, it never crossed my mind. Of course we agree, and the nurse helps us. So we lift Daniel slowly out of his tiny bed and we place him into Yuki's arms. He is so fragile that I am afraid I will hurt him, but the nurse tells us that it is okay. After a while Yuki and I change positions, and again the nurse has to help us, so that the drips and sensor cables to not get entangled. Finally, I hold him in my arm. Something that is so natural for every parent, we had to wait to do for nearly one week. And even we can hold him, it will still take a few weeks until we can take him to our home and start a more-or-less normal family life.

On April 16, Yuki comes home from the Hildegardis. I see that the siphoning of the milk is very painful for Yuki and I suggest that she stop it. If I would have known how much my proposal would hurt Yuki, I wouldn't have said that. I have to recall myself that this is the one and only thing that she can give to Daniel. How stupid could  I have been to suggest that she stops this?



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1. Chapter 1.

1. Introduction
((uploaded Nov 1, 2000 last update Dec 12, 2000)

2. The first months of his life

2.1. Daniel's birth
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.2. First Operation
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.3. On the normal pediatric station
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.4. Our church and the Heart-League
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.5. Life in Mainz
(uploaded Nov 27, 2000 last update Dec 12, 2000)

3. His first year

3.1. His first baptism
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.2. Christmas in hospital
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.3. Cramps
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.4. Second operation and first near-death
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.5. The decision to go to Japan
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

4. 1992-1993 in Sendai
(uploaded Apr. 24, 2001)

5. Daniel's School Days
(uploaded Jan. 24, 2003)

9. His death
(uploaded Mar 13, 2001 last update Mar 13, 2001)

10. The days after
(uploaded Mar 13, 2001 last update Mar 13, 2001)

11. A New Life
(uploaded Jan. 24, 2003)

12. Annotations

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