Card-AG - The Cardiologycal Working Group of the University Pediatric Clinic Münster

Marlon's story

Parents Report: Marc & Elke Behrendt

In the 4th pregnancy month we learned from our gynecologist in Haltern that our child had conspicuity at the heart. For the confirmation of ist diagnosis she passed us on to a colleague in Gelsenkirchen. This doctor confirmed the first diagnosis. The heart was too big for this pregnancy month and the size of the Embryo. The doctor in Gelsenkirchen recommended an examination in the university hospital in Hanover. There was a possibility for prenatal diagnostics for congenital heart diseases and a cardiological ward for children. We went to Hanover. Several ultrasound scans and tests were carried out. It was confirmed that our baby would have a heart disease. In order not to have always to drive 500 km to Hanover, we were transferred to the university hospital in Münster. Again ultrasound scans were carried out there. In the ninth pregnancy month we learned that our baby would have a "Hypoplastic Left-Heart". Shortly after birth our baby then should have an operation. Already during the pregnancy we were informed that presumably three operations would be necessary.

The day of the birth came. For the delivery we went to Münster. In the last examination before the delivery our attending senior physician told us the heart defect wouldn`t be a problem and the child could be born with a natural birth. The birth course proceeded normally till the fruit bubble bursted. But then the unbilical cord shoved itself in front of the little head and interrupted the blood and oxygen supply. The midwife tried to shove the umbilical cord to the side. In addition, many doctors and nurses entered the room. Everything went very fast now. A emergency section was undertaken. Within five minutes our son Marlon was born.

Shortly after the first examination Marlon came to the cardiological ward for children.

Within the first seven days, many examinations were carried out. The doctors noticed that Marlon had a very rare heard defect. Both cardiac valves of the left defects had not been known in Germany before. The doctors wanted nevertheless to operate our son. Without operation he wouldn`t have had any chance to survive. The second possibility was a donator heart. He was accordingly put on the donator heart list. We learned from the doctors that the change to get a donator heart was very low.

Marlon was baptized by a deacon on 09/07. The two godfathers were also present. It was a very beautiful celebration. The deacon was there for us during the whole time of the treatment. He gave comfort and hope or simply listened to us. This gave us much strength for the forthcoming operation.

On Tuesday the 09/11 Marlon was operated. We came into the clinic very early to accompany him to operation room. The farewell was very difficult for us. We then went to the church to light a candle for Marlon. A candle permanently burned also at home.

The operation proceeded very well. Marlon was back at the intensive care unit 19B at about 6 p.m.

In the following days Marlon developed well. The heart values as well as the oxygen supply got better.

After a week the thorax was locked since the water storages went back. But it then was noticed that lymphatic had been damaged at the operation. This, however, wasn`t so critical. Only Marlon was not allowed to eat or to drink at first. He was fed artificially.

During the following days and weeks however Marlon didn`t feel better. The medicine for the heart couldn`t be reduced since Marlon reacted to every change of the medicine very sensitively. Marlon couldn`t breathe alone. He was too weak. The artificial respiration machine couldn`t be switched off. The doctors informed us that his heart was in a very bad condition. Marlon was ranked higher in the donator heart list.

On Sunday, 10/14 a nurse of the intensive care unit called us at home. A donator heart was available.

We were very lucky. The donator heart was suitable for our son Marlon. While the heart was fetched, the doctors prepared Marlon for the operation.

Around midnight we got the relieving call of the senior physician of the clinic that the operation went well. Marlon had come through everything well and was back on the intensive care unit again the next morning.

From then on he got steadily better. We were told that only 2 or 3 hearts per year are transplanted in Germany. We were very happy about it.

The thorax was closed two days later. The artificial respiration was taken out another two days later. Marlon could breathe quite alone now. He felt better every day.

On Monday 10/22 Marlon was transferred to the cardiological ward for children again. He got a single room here. Everything had to be sterile. We could enter his room only with overall and face-mask. He made good progress, he had, however, forgotten how to drink. His nurse explained to us that Marlon had forgotten drinking and sucking reflex. He must learn this a new with the help of a physiotherapist now.

We were invited to a conversation with a psychologist. Many things in our life with Marlon at home had to change. Flowers may only be in the apartment as hydroponics. We may not keep any pets. Much has to be taken into accound as concerns the food. He may eat no nuts, unpeeled fruit and vegetables, grapefruits, raw meat and raw fish to list only some. Marlon may not be taken on an indoor swimming pool in the first year.

This rearrangement in our life will be very difficult but we certainly be happy with our child, when he finally will comes home.

We have written this letter to appeal to other concerned parents. For the purpose of information exchange we would like to get in contact with parents who also have a heart transplanted child.

Haltern, 31.10.2001 Marc & Elke Behrendt