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

Lisa´s story

Parents Report: Martin & Ellen Goldkuhle

Hello, we are the Goldkuhles, Ellen, Martin and Lisa. We live near the beautiful Münster, roughly between Dortmund and Bielefeld, in Germany.

Lisa was born on 7 October 1998 after an unobtrusive pregnancy, 10 days overdue and after two days of artificial drift in the Marienhospital Oelde at 22:13 by Caesarean section. She weighted impressive 4100 g and was 52 cm tall. We were happy and enjoyed this moment as one of the most beautiful in lifetime, to hold our child in our arms.

The next morning, everything war still all right. I had Lisa on my room to nurse her, and then I put her in my bed. The first visitors came and were happy with us. In the afternoon Martin (I was not allowed to get up yet) went with Lisa into the infant room to change diapers. When dressing Lisa the infant nurse immediately noticed her blue feet and she arranged for a blood gas analysis, the results of which suggested no good news. The ambulance was called and after Martin had informed me about the situation, I was allowed to see Lisa once again briefly. I was allowed to say goodbye to my daughter in tears. It was cruel!!!

Lisa was taken to the paediatric clinic in Ahlen and provided with the essential Prostaglandin E (MINPROG) there, so that the ductus would not close. After a night in Ahlen, she then went on to Münster on Friday to the children's cardiological ward of the university clinic. I lay in the Oelder hospital till Saturday morning when I could be transferred to Münster. A gigantic mountain of worries and fears which could not be handled apparently accumulated in front of us. But with time we learned quite fast to got the way step by step.

I still had been quite well in Oelde, but when I finally saw Lisa again in Münster I started crying at her bed. After the first ultrasound had been made we got a diagnosis: Extreme Pulmonalstenose. Unfortunately, a great doctors convention was taken place in Munich at that time, so there was only an emergency available. The doctors in charge only on Wednesday next week. This was when we got the final diagnosis after another ultrasound examination: Pulmonalatresie with hypoplastic raked ventricle. An operation should take place as soon as possible. But of course, it came differently: Lisa had already got a staphylococci infection from the navel vein catheter, which was then treated intravenous with antibiotics.

So we had at least a little time to get to know each other. I nursed her despite the frequent hurly-burly in the room which was used for six babies. But I wanted to do all I could. Lisa really had a distinctive appetite. Although she always spend four hours between the meals sleeping, she awoke, it could not go fast enough. (After the operation, she has never sucked at the breast so strongly again as at that moment and she has never expressed hungry feelings as she did then.)

It took a week before the blood values became better. This gave us the time to have Lisa baptized by the very sensitive clinic pastor on 19 October. The doctors decided to carry out a heart catheter examination on 22 October 1999, to be able to plan an operation still more exactly. After I had brought Lisa to the examination that morning, I was informed that Lisa was transferred to the intensive care unit, because the operation should take place Friday. To make it easier for Lisa and the anesthetist, the entrances had been kept from the heart catheter examination, which required intensive care. We were on the intensive care unit earlier than planned. We were allowed to inspect the intensive care unit with a social worker briefly a couple of days before, so it was not so frightening anymore.

After work in the evening a slide lecture, which prepared us for the post-operative procedure, was shown to us by Tobias, a male nurse of the children's cardiology.

On the day of the operation we have submitted Lisa to the operation team with very confused feelings at 10:30. We had to wait now. Around 16:00 we got increasingly more nervous, as this was when the operation was planned to come to end. Towards 16:30 we called on the ward and learned, that the operation had been successful and that we could see Lisa in approximately half an hour. The surgeons had opened the grown pulmonal valves and extended the discharge-tract by means of a patch out of the pericardium. One ASD had been reduced from 9 mm to 3 mm and an aorta pulmonal shunt from Gore-Tex with a diameter of 3,5 mm had been sewn in.

We saw Lisa lying there with all the tubes; this was a terrible sight. But we felt the strength of this little creature and we admired it. The post-operative recovery proceeded without complications, Lisa was extuberated after six days and I started nursing her on the intensive care unit again. Unfortunately, her sucking reflex was not strong enough to activate the milk production. Therefore, I decided to feed her during the clinic stay with siphoned mother's milk. Lisa was transferred again to the children's cardiology on 1 November.

The further recovery proceeded very well. I always took care of Lisa's meals myself (except during night time). Fortunately after my stationary dismissal I had got a room in the family house, which was only 100 m away from the clinical complex. The fresh air on the ways between clinic and family house was very good for me. I had a beautiful room with an own bath, a little refrigerator, telephone and television sets there; an additional bed was also there so that Martin could be with us at the weekends. One could do everything at the kitchen (which is used by all the families) and the responsible person, Mrs. Horstmann, knew some sensitive rebuild conversation.

Finally on 11 November, Lisa was dismissed. She had picked up none of the circulating infections and her weight was 3600 g. Lanitop and ASS were prescribed. At next controls, attention should be paid mainly to the shunt which must not close to the right ventricle which had to get larger.

At home, I was more successful at nursing. I nursed Lisa fully for 5 ½ months, then lesser until the seventh month.

Controls in December and in February proceeded as expected, the shunt worked well and even the right ventricle started growing slightly.

In April we went to control in a good mood, but it turned out that the right forecourt and also the liver were extended strongly, which suggested a trikuspidal valve stenosis. The doctors did not see greater need for action yet, though. Only Spironalactron, was ordered as medication for the drainage and the next checkup was set for June 16th.

Lisa`s everyday condition was not unusual for us, she is just quiet without great claims. The only thing we realized was increased sweating when drinking.

A week before the said checkup, I could hardly sleep because I suspected nothing good. This proved well founded. The liver and the forecourd had further enlarged and it was clear that the backwater started out from the too narrow trikuspidal valve. The attending cardiologist told us that this Stenose must be corrected in another operation. A heard catheter should be made before. We asked whether a balloon-catheter could not help because we had heard so at our stationary stay. But this method was not possible and the operation was unavoidable. The catheter examination was fixed for 28 June. The disappointment was very deep, this had to be digested first. But crying was of no use.

I decided to stay with Lisa on the ward and got a bed in the mother's room. I wanted to be there if Lisa could not sleep because at the age of nine months she already noticed a lot of what was going on around her.

So, I accompanied Lisa on Monday morning at 8.00 to the heart catheter laboratory again. (By the way, this heart catheter, a silicone tube was introduced to the right tear duct also, which was probably too narrow or blocked and caused conjunctivitis every 14 days.) On this day, we did not get the exact results yet. On the whole Lisa had come through everything very well, but the doctors wanted to have a close look at the notes the next day to then fix the further procedure.

On Tuesday morning, we were then suddenly called for the echo examination. We were welcomed by a whole crowd of doctors at the ultrasound examination. The trikuspidal valve was examined once again. The senior professor then expressed his opinion. The catheter and also the ultrasound had shown that the heart valve ring was to narrow and that there was a good chance to stretch it to assess but it would be worth the try. It could prevent an operation. Despite the doubts we agreed and the appointment was for the following Monday, 5 July 1999.

Within the following days on the ward the blood circulation of Lisa's legs caused a little worry. By a Heparin drip, however, this problem should be handled. The professor came a few times, he had carried out the first heart catheter and explained to me that it had not been easy to find a fitting vein and also a fitting artery and that he had needed several necks on both sides. He also explained to me that finding one fitting bloodstream with the 3.5 mm thick balloon-catheter could but it would not be hopeless. On Friday, the leg blood circulation was so good again that we were allowed to go home till Sunday evening. The two nights were good for Lisa and myself.

Monday morning, we went through the same procedure as the week before. But this time the waiting was still more difficult. We learned later that this had been the first time this operation was carried out in Münster. This heart catheter lasted too long but we finally got the message at 12.30 that Lisa would be ready. The flap would be extended now and the pressures were o.k. so far, only the flap would no longer close correctly, but this had been foreseen. Thanks to God and this patient professor, we can now hope again.

The leg blood circulation was better and we were allowed to go home on Thursday. In the following time the sweating reduced considerably and Lisa got livelier. The professor was very content. In December a light liver extension could be felt, but we are looking positively forward to the next control on 11 January 2000. We are curious if the rake ventricle is developing now.

Lisa has learned to walk in the meantime and she gives us a lot of pleasure. With her almost 8 kg she is not really a heavyweight but this might also be caused genetically. She eats quite properly. We are also lucky, that she has not had any infection except for a couple of small colds which disappeared without fever again.

We wish all the best to all children suffering from a heart condition and their families.

Ellen, Martin and Lisa Goldkuhle on January 6th, 2000

Supplement

Hello, it is now three years later and here comes another report on the well-being of our daughter Lisa.

Control in January 2000 had not yielded any essential changes and so the next appointment was arranged for the beginning of July. Lisa had the chickenpox in March. We had slight fears at the beginning of May that Lisa's condition would deteriorate. We had noticed that she had blue lips now and then but this did not last very long time. At the examination in July 2000 it was that the shunt had shut itself and that the right ventricle had opened sufficiently now. The tendency Lanitop two times a day was necessary. Next control only in nine months - excellent.

We had decided after all the former hardships, to apply for a family-oriented rehabilitation. With the help of our paediatrician and quite a number of tips of Mrs. Schwab-Geiger (thanks!!!) from the children's heart forum we got a confirmation from Lisa's health insurance company. So at the end of December we drove all three to Bad Oexen for four weeks where we felt very well and recovered well. Because of our request Lisa's paediatrician has us sent to the heart center Bad Oeynhausen to get a second opinion. What we already knew from Münster was confirmed here. The cardiologist told us that Lisa surely would need a heart valve replacement sooner or later.

A next control in Münster in April 2001, no essential change was established to Lisa's heart. She develops well and is a lovely bright child without handicaps.

Since January 2002, Lisa has gone every afternoon with her best friend of the same age to a nursery school for two hours. She likes it very well and she grows more and more self-confident. We have the attention of the educators drawn to Lisa's history and they know what they have to pay attention to. However, they treat Lisa like every other child.

The controls in April 2002 and January 2003 in the heart center Münster showed no essential changes. Lisa feels very good and since August she goes to the nursery school also in the mornings. By the way she now has a healthy little sister who was born in November 2002. Lisa is very fond of her and hardly jealous. Only now, when I see her sister, I realize all the things Lisa was not able to do during her first months.

Lisa knows that her heart is not alright because she must always take her drugs. I have deliberately included the photos of the intensive care unit in her photo album after the operation. When looking through the album she asks me from time to time what the individual tubes mean. I then sit down and give her an explanation according to her age. I always end with explaining that she accomplished something very special as quite a little baby and that although her heart is not normal it is not ill either.

We are pleased that she is doing so well and hope that, of possible, her body still tolerates the two insufficient cardiac valves so well.

Much love to all children suffering from a heart condition and their parents from the beautiful Münster.

Ellen, Martin and Lisa Goldkuhle in February 2003