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Daniel's Story Chapter 2

2.1. Daniel's birth

On April 9, after Yuki and I went to bed, she suddenly says. "Oh, I think my water broke." Thus we decide to call a taxi, grab our bags and rush to the hospital. We are very happy and excited since this child is our first one. After a few hours of delivery pain, the nurse shows us a baby boy at 5:43 a.m. on April 10th 1990. Yuki is very tired and can barely speak. I take the baby, and after the initial checkup from the doctor, bathe him. He is a cute healthy baby with a rosy face and a tiny voice. Since we didn't know if it would be a boy or a girl, we thought about two names. Actually we had chosen 4 names, two for a boy and two for a girl. One Japanese and one Western name. Thus after his birth, we name the baby Daniel Tatsuo. Tatsuo after Yuki's father, who passed away when she was 16 years old. Daniel, because it is a very old Biblical name and we like the story of how God protected him in Babylon. The Biblical Daniel was a child of God, and so should be our son.
After the delivery and the bath, Yuki breast feeds him for the first time. Daniel seems to be somehow tired, but normal. After a while he is brought to the baby room and Yuki and I have a rest, during which I am giving breakfast to a totally exhausted Yuki. The Hildegardis hospital is halfway between the bottom of the Mombach valley and the university, on top of that valley. Around 9 in the morning I take the short but steep slope from the Hildegardis hospital to the university. Everybody in the laboratory can immediately see from my shining face that I became father just a couple of hours ago. I receive a great hello and many congratulations from everybody around. I decide to work in the lab for the rest of the day and want to return to Yuki in the late afternoon.
Suddenly at 3 p.m., a phone call from the hospital. It is Yuki.
"Olaf, something is wrong with the baby, can you come?"
Of course I do. As fast as I can, I return and some 10 minutes later, when I enter the children's ward, I see Yuki standing in front of an examination room. I want to know what is going on , thus I enter and see Daniel with a couple of doctors, nurses around him. Daniel is wrapped in aluminum foil, to protect him from under cooling. One doctor has a oxygen nozzle in front of his face, while a second doctor prepares an infusion.
"What is going on?"
"One of the nurses saw Daniel getting blue in the face and they immediately called us. We are from the university hospital. We do not know what is wrong, but we have to take him with us."
I thank God for the awareness of the nurse. Of course I have heard of the "blue babies", but it never occurred in my family, nor among our friends. It never occurred to me in my wildest dreams that it could happen to our Daniel.
"What is the reason for it?" I ask.
"We do not know; it can have several origins. An infection with retro viruses, a problem with the lung, or with the heart. It makes no sense that you come with us now. Please come in a few hours, then we know more."
They leave in a rush with Daniel and Yuki and I are left alone and go back to Yuki's room. We decide that I go to the university hospital alone, since Yuki is still very weak and can barely walk. Thus, in the evening I get on my bicycle and ride the 1 km from Yuki's hospital to the university hospital. First, I have to go down to the bottom of the valley and then up again. The way is steep and in-between I have to climb some stairs. From now on, this should be my daily routine for the next few days. Visit Yuki, down the valley, up on the opposite side, visit Daniel, go down the valley and on the opposite side side up again to my laboratory in the Institute of Organic Chemistry.
When I arrive at the intensive care unit of the children's ward, which is located in a barrack across the road from the children's ward, a nurse greets me at the entrance and shows me how to wash, disinfect my hands, and put on a sterile blue coat. Then she shows me Daniel's room. I enter and am taken aback by all the monitors, pumps and drips around his bed. The only sound that can be heard is the regular beep-beep of the heart monitor. Daniel's body itself is covered with a lot of electrodes, intravenous drips, and other sensors whose function I do not understand. His hands and feet are covered with gloves and socks, but except for this he is naked. I just stand there and stare. Not much I can do, I think. A nurse asks me if this is the first time I have seen my child after this new development.
"Yes, it is", I answer.
"Oh, I didn't know that. We should have better prepared you for what you would see."
Well, now it is too late for that. I ask some questions here and there, what this and that is, and the nurse gives me a brief explanation. After a while, I am escorted to a waiting room.
A doctor comes and gives an explanation. Daniel is presently in a somewhat stable situation. He is getting medication that keeps the Ductus Botalli open. His body now gets enough oxygen, since he gets oxygen-enriched air to breathe. The cause of Daniel's getting blue can only be speculated upon. When Yuki's water broke, a couple of hours before the birth, may have lead to an infection with viruses. But a congenital heart defect cannot be ruled out. Tomorrow the team wants to perform a heart catheter. This will then make Daniel's situation clear and what can be done from now on. I agree to everything.
On my way out the nurse tells me that I can come anytime. The station is open for visits 24 hours a day. I am very thankful that I, and later on Yuki, too, can visit our son as many times as we like, and in the future we use this offer freely.
I cycle back to the Hildegardis, report to Yuki and drive home.
Of course we have since long before planned that soon after the birth and that we will take our child with us home from hospital. We have bought many things, and our used-to-be living room in our 50 m2 apartment is now already a baby room. We have a baby bed, and a baby's dressing table. All lotions and creams are just waiting for our little son. But they have to keep waiting. That evening I am not sure if they will be used at all. Maybe we had just bought everything in vain.

April 11, 1990
We decide to buy a pump with which Yuki siphons off her milk. From today, I bring this milk to Daniel, because the doctors want Daniel to start drinking as soon as possible. What a testimony that the natural nutrition is the best! With all the apparatuses and medication to keep Daniel alive, the doctors know that the best for him will be his own mother's milk.
At first, only a few drops flow, but the volume increases day by day. It hurts Yuki to do so, but she is steady and determined. It is the only thing she can do for Daniel right now and it helps her, too. She pumps off the milk twice a day and puts it into the fridge at the Hildegardis. I take the refrigerated milk to the university hospital every morning after I was instructed how to label the bottles and how to put them in the refrigerator in the university hospital. Then I take two sterilized milk bottles out of the machine and bring them to Yuki.
In the afternoon, what seems to me like hours and hours waiting in that small counseling room at the university hospital, I finally get called by Dr. Schranz. His first words are "well, your son chose to have a not so easy heart defect", a wording that should tell me the truth, but shouldn't be too shocking. The diagnosis that follows these introductory words is:

* transposition of the large arteries
* Pulmonalatresy
* hypoplastic left ventricle
* ventricle septum defect
* atrium septum defect
* not unambiguously identifiable AV valves

Dr. Schranz takes a lot of time and patience to explain this to me. He listens to my questions patiently and gives detailed, but easy to understand answers. I feel that he is an expert in his field and I trust him. For a lay person Daniel's diagnosis means that the oxygen-rich and the oxygen-poor blood is mixed in his heart. Furthermore, the only way that oxygen-poor can reach the lungs in order to be re-oxygenated is via the Ductus Botalli. That is why he became blue a few hours after the birth, when the Ductus closed, and hadn't there been a very watchful nurse at the Hildegardis, Daniel would have died of 'inner suffocation', or at least would have suffered very severe brain damage due to the lack of oxygen in the blood.

But the shape and the function of Daniel's heart is not the only anomaly. Furthermore, Daniel's heart is in the center instead on the left side of the thorax. Another fact that the doctors find very important is that Daniel seem to have no spleen. It does not occur to me that this is important, since I know that one can live without one. Later on it should become more and more clear why the doctors were looking very carefully for a spleen.

After all this explanation, the main focus of my questions is, what the doctors can do from now on.
"Well, we will keep his Ductus open with medication as long as possible. Maybe we will insert a wire-network into it, in order to keep it mechanically open. This is no problem to do with a catheter. He should be as big as possible for a future operation."
With this information I go back to Yuki and decide to tell her step by step. Since her German is not sufficient for all those medical terms, it is difficult for her to comprehend fully.

April 12, 1990

Yuki is still in the Hildegardis hospital. She is exhausted and can barely walk. The contractions of the uterus are painful. Thus I ask the doctors if it is possible that Yuki be transferred to the delivery ward of the university hospital. They bluntly refuse.
"You see, being pregnant and giving birth is not an illness! There are many mothers who decide to go home the day after giving birth. If you want, you can go home!"
How outrageous! Here is my wife, still weak, and she can't visit her newborn baby who is on the intensive care unit of the university hospital! But all reasoning with the doctors is in vain. Yuki will stay in the Hildegardis.
Hence we decide to go to the university hospital by taxi. We have plenty of time beside Daniel's bed and can see him as long as we want. The nurse gets a chair for Yuki and we place a small pull-string doll beside his head. He cannot see the clown's face, but the music is a welcome change to the monotonous beep-beep of the monitors.
I call my parents for the second time in two days. "We know from a friend that now in England a so called "switch operation" can be carried out, in which the two transposed arteries can be replaced in their proper orientation. With this, the children can live." This is very important information for me!



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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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