Anna – sunshine with down–syndrome and congenital heart disease

Anna`s story and the experiences of her parents with the non-medical support during the days on the cardiological ward for children 18b west of the university pediatric clinic Münster. Report of the mother Andrea Krebbing.

Our sunshine was born on August 11th, 1999, the day of the eclipse of the sun. I can not claim as a mother that I had a easy pregnancy and birth. During pregnancy a red chalk infection was suspected because my antibody was very high. During the birth two gynecologists and one pedriatrician were present. It was a sucking bell birth because Anna`s heart tones had fallen to around 70. I pressed strongly, the sucking bell slipped and the doctor cut quite generously. An extra press and I felt an it a colossally big atom modul would be driven through my body and Anna was there. She lay on my chest. "This one is purple" was the first I could say but she was probably only bloody. Anna yelled only for a short time, she otherwise was suspiciously quiet. No looks, no searches for the breast.

She seemed to laugh at us and I found it a little funny although I was sad that she did not want properly to make contact. Then still the sew in full narcosis because I was bleeding a lot. The day was over and I was tired. Our sunshine was there!

August 12th, 1999. The life spirits slowly come back into my weak body. Then the message. Down`s syndrome. What was that mean? But the eyes of the doctor were serious.

August 13th, 1999, Friday the 13th! Congenital heart disease! Anna has a heart defect. As if the Down`s syndrome was not enough. The doctors in the Marienhospital in Wesel where Anna was born reacted fast and started the corresponding ultrasound examinations after suspicion on Down`s syndrome. Congenital heart disease.

August 18th, 1999. The first time on the cardiological ward for children in Münster - more to come. Anna has a very big hole in the ventricle partition, also covers the front and main chambers. The chamber flaps work only like a big flap. If this is open, the heart only consists practically of one big chamber. Oxygen-deficient and rich blood mixes unhindered. Anna has a narrow part of the upper area of the aorta as well as an open ductus.

November 03th-07th, 1999. Heart catheter examination in the university clinic Münster with Prof. Vogt. As a mother I have a bed in the parents room at the ward. Frank, my husband, stays in town at a cousin`s. During the examination of almost three hours we may stay in the parent`s room. It is a beautyful little room with two little benches, happy pictures, a carpet, breast pump and a little writing place for the psychologist at the ward. Retreat possibility of the ubiquitous sorrow which unavoidably catches up children and parents again and again. Hopeful and hopeless cases meat each other at the ward. Psychologist Janina Sensmeier arrives while we stay in the parents` room. She asks us how we feel and whether she can help us with something. It is a nice but also relatively short conversation. We would rather be alone at this time. We are glad that this feeling is respected and that we are not overprotected. Our feelings are taken into consideration. The heart catheter examination shows that an operation will be necessary in February. The wall between the chambers of Anna`s heart shall be artificially laid out and the flaps divided and new be put together. February 16th, 2000 is scheduled as the OP appointment.

February 14th - March 31st, 2000. Operation. Anna comes through well. Medical as well as non-medical staff and other parents take great care. Three children die. Anna lives! This is the short summary of almost seven weeks university clinic in Münster.

We have taken quarter in the family house opposite the university clinic`s main building this time. Such a family house should not be missing for any larger hospital. It is more than just an attractive new building with an architecture prize. Family members of clinic patients can live hear from several days up to several months. The appartments are spacious, bright and kind. A community kitchen and living room equipped very well is available to all residents. An entrance hall made of glass which is high and equipped with seat corners, plants and the piano creates a cosy atmoshere. Smaller living rooms, a game room for children fitted out completely as well as on the outside game equipment and playground almonst create the impression of a vacation. Were there not...but exactly this is what helps. To find recreation for the next hours and days. The manager Mrs. Horstmann and her team also contribute to this atmosphere. They always have a nice word for one and give the housea certain charm.

February 14th. At home everything is packed. A last look into the child`s room. Hoping. Hoping that Anne will see this room again. When? At all! Nurses, beds, registration forms. Photo examinations, an unexperienced student, doctor conversations. Signatures. The risks are... ......mortality rate sign. University clinic. In between, quiet time to think. Too much time? Too little time for Anna. For how long will we still have her? Conversations with other parents, mostly mothers, the men must work. Conversations about operations which have gone well. Heart catheter, the child may go home the next day. The fear we had of the heart catheter seems so harmless to us suddenly. However, for all people situation which they must just master is the worst and something worse does not seem conceivable. This understanding remains. Does it probably get lasting a life? Hopefully. Appreciation of many a lack of understanding also remains. In the clinic - in everyday life.

February 15th. Julia (3 weeks), hypoplastic left heart syndrome, heart catheter come through, has an operation. The eyes of the parents are red as they have handed in their child to the OP area. Will it stay? Julia will die. The day after tomorrow. After a reanimation and a slepless night. Never been at home. Still don´t know it for the parents. Comfort builds up. Conversation help and turn away. The operation runs. Is complete. Why we mustn`t? Comforts, into the arm takes. Julia is bad, very bad for Julia`s parents. Anna will have her operation tomorrow. Fear? Yes, of course. Strong now for Julia`s parents. The last day with Anna? Enjoy. Being fond. Perhaps the last photos.

February 16th. Annas operation day. Comforting Julia`s parents. But we have to be preparing Anna for the operation. Walk with Anna, as with Julia the day before. Going back with red eyes. Vacating Anna`s bed. Perhaps she may live. She then comes to the intensive care unit. Into the family house. Many memories are missing, what remains are the feelings. Hope and helplessness. As if the sand-glass runs backwards the time seems to stand still by playing. Anna is linked up to the cable network now. She attempts so sleep.We try to divert ourselves still by playing cards. She could be at the heart and lungs machine now. What are we playing actually? The thorax could be closed again now. When will the call come? At 6 p.m. we don`t stand it any more and call on the cardiological ward for children. Nurse Silke is so kind to call the intensive care unit. Anna is there. Arrived just. We could jump to the ceiling, so happy are we. Anna lives! Doctor conversation. 8 p.m. We may to see Anna.

February 16th - February 26th. Intensive care unit. Anna recovers visibly after having swollen up like a balloon at first. We try to be with her as often as possible this time. We nevertheless have to be at ward 18 B at least once every day. The interchange with parents and the psychologist is valuable and brings about change. Frank, who is a teacher, is given leave until February 18th. School starts on 21. The days are longer for me now. I sit on the intensive care unit alone for many hours.

February 26th - March 31st. Cardiological ward for children. Anna is recovering steadly, except for some minor problems. Only a Chylothorax causes considerable difficulties, especially with respect to weight, food and primarily duration of the clinic stay.

The educator Monika Thissen and their employee offer offers not to be underestimated in this situation. The ward has a game room equipped which is not at all usual for children`s wards generously. At the same time, the room is also used as a television room for parents and visiting brothers and sisters. Children and parents are offered the possibility to paint and draw and to do handicrafts, free of charge. During Anna`s time at the hospital we once painted windows which special window colors which was great fun. Thus, confidence arises and trust is built up. At carnival the ward is decorated and the children wear fancy dress. The educators organize a special lunch with French fries, chicken, dessert and everything that one desires. Everyone celebrates and enjoys themselves: the children, nurses doctors, the psychologist, the parent, as well as the catering and cleaning staff.

From time to time "Purple" and "Asparagus" visit the ward. These are the hospital clowns. They make children and parents laugh with their funny programm. Every once in a while a nurse stops at the game room door and joins in the laughter.

One day, shortly after Anna has been dismissed form the intensive care unit, Ulrike Mönters stands in the door. She says she is the music therapist. She asks whether she may make music with Anna and Leonie, Anna`s bed neighbor, also a child with Down syndrome. Anna and Leonie are not quite well yet and so we don`t agree. Ulrike, therefore, decides to come back some other time. I am a little astonished and wonder why a six months old child should need a musicotherapie. I was wrong, however. Several days pass by and the music therapist comes once more and brings a guitar, a package of song texts and a suitcase full of rattles, bell ribbons and similar items. For Anna, I select the bell ribbon. Since the OP, Anna has been relatively quiet. Her smile comes back only slowly. I can hardly desribe what the bell ribbon, the guitar music and the singing do with Anna. Anna revives and laughs and coos loudly. She still enjoys herself even half an hour ofter the music therapist and her bell ribbon have gone. My husband brings a guitar from home. Towards the and of her stay in hospital, when Anna may come to the family house from time to time, we play her there. Anna also gets a bell ribbon from her grandma when she is dismissed from hospital. It is still one of her favourite toys today.

Janina Sensmeier, psychologist, and Betty Langhans, social education worker for social legislation: Two people to ask for support with personal and legal problems, health cure applications, nursing insurance etc. We learn from Janina Sensmeier that Anna is entitled to a rehabilitition (which offers the possibility of a family oriented rehabilitation). This means both parents and possible brothers and sisters can go to the health cure together. We receive extensive information material as well as addresses and phone numbers of contact points. Our application represents an exceptional situation since Anna and my husband are insured privately while I am a member of the national health system. The application has finally been accepted today. Anna is a Reha patient and my husband and I are both escorting family members without Reha. If we want to receive treatment as well, this has to be prescribed by our doctor at home.

Reasons: A father and a child health cure allegedly isn`t possible in Germany. Only an institution in Southern Germany offers something like that, however, they are not specialized in heart children. An the national health system would only be responsible for a mother and a child health cure. Poor Germany! What do all the single or widowed fathers do? Because of those problems we have received our health cure confirmation so late that all the health cure places have already been booked out for the summer vacation. We will therefore have to go during the fall vacation. From Betty Langhans we also receive information on nursing insurance as far as possible. A first application in November has been refused despite Down`syndrome and congenital heart disease. A second runs in the meantime. Janina and Betty not only help with these administrative problems. A private exchange is possible any time. One may talk about feelings. A pity in only that a present there is no possibility to make premises available for this team in the ward.

Anna`s difficult operation has been the reason for this clinic stay.However, we have felt comfortable on the intensive care unit 19 B as well as on the cardiological children`s ward 18 B, in the family house and in the gymnastic area with the physiotherapist Karin Hoffmann. The conversation with other parents, the nurses or the doctors always were supporting and helpful. Even today, at every control examination we briefly visit the cardiological children`s ward.

One day. Two children leave the ward. Anna goes home. One of the children leaves forever. After three operations the battle has been won. Three and a half years. Three and a half years also was the age of our best friends` son. Then he died. Two years ago at another clinic from a liver deficiency. The friends pay a visit to us in Münster and remember: "And we thought we had been looked after well and that the hostel had been beautiful. Here, however,..."

Andrea Krebbing 04. July 2000
www.krebbing.net

Menu | What we do | Information | To the heart operation | Contact | Your way to us | Parents reports | Links and literature | Clementine von Wallmenich award | Visitor's book | Donations account