Zwart, Aagje, Babette and Suze

As an introduction of myself... well where to start... Let me start at the present. I'm a bit like Dawn, busy up to my eyebrows :) keeping the Dutch support group going and growing, trying to reach as many people as I can involved with CDH. In the mean time I have a job too, to keep my family supported. Married, two healthy children, a boy, 4 1/2 and a girl, 1 1/2. At first sight a very happy family.

Hmm, happy story, I should stop at this stage... No, have to tell more, because there is more to tell. I have not committed myself to this support group just because. (though I wish I could have). Our first encounter with CHD ( as we call it- and looks better in typing also) was in 1990. While in the hospital to make a routine echo to establish the duration of the pregnancy, the dr. did not trust what she saw and sent us to a university-hospital for a second opinion. Yes, you guessed right. Both hospitals advised to end the pregnancy (at about 25 weeks). At that time we were completely blank and we let ourselves be lead by the advice from both hospitals. We had a beautiful little girl and named her Aagje. We never saw her eyes, too shy to ask if we could look, or too reserved to take a look at everything. Having your first baby is one thing, having your first stillborn is yet another. Doctors said, after some genetic counseling, that something like this was so unlikely to happen, that it was never to happen to us again.

So after unbelief, grief, sorrow, anger, we started to find out more about CHD. To our astonishment we found a medical studybook which contained a chapter on hernia repair... our mouths fell open. So there would have been another option for our little girl and they never told us. But there was no way of turning back the clock. No way of knowing what would or could have happened. A year went by and about the time our daughter was born a new live was starting to grow. Yet again we were not sure when this little life started, and the whole history repeated.

And the WHOLE history repeated, but this time we were determined to keep this baby, to let it show the world CHD could be defeated. We went to another university hospital, where a -at that time- new technique in Holland, ECMO, had started... Who knew, maybe we would need that. Our second daughter came, doctors fought for her life, but Babette was no more than 15 minutes with us. We learned a lot, we have had her home and many friends and family members came to see her. Frightened, not knowing what to expect, and then, after visiting Babette, astonished, happy almost, for so much beauty and peace they saw.

One can call it stupid, one can call it brave, but we wanted to have children of our own, so after a year and a half we had our first son. By that time we had started the support group and we became very well informed about CHD. When our son was born we had to fight the prejudice that 'it would be inherited by girls only'.

Having a healthy baby tends to keep you busy... sometimes drifting on pinkish clouds, sometimes worrying, little sleep... In a way our two girls got their place in the family and we tried to live on, getting the support group on the track, which by then had some 40 couples. So a year and a half later CHD was not the first thing we thought about when my wife was pregnant. Of course we went to the hospital, at 13 weeks gestation. An ultrasound did not exclude CHD!!! The dr. would be sure at 16 weeks... Three more weeks... Hell... Three long weeks in which we could not do a thing but wait. After that time we went back to the hospital to be certain of what it was... The world collapsed. We almost wrecked the machines. Again... Why we, why, why, why, what now, what to do? End the pregnancy? Carry on? We had done both, none of them with a result we were satisfied with. And there was no other alternative. After long talks with a psy we came to the conclusion that the only thing you have to live with your whole life is your feelings, not your ratio. And our feelings told us we wanted the child to show us -with medical assistance- what it was worth.

Weeks crept by, at 37 weeks we went to hospital and a large team was ready, even the professor, who wanted to see this one for himself. (he became one of our closest 'battle-companions') April 28 1995 Suze was born. And she was taken care of by almost everybody in hospital (seemed like that anyway). After fifteen minutes she survived her sister, after half an hour she was taken from the delivery-room to intensive care. In the evening, when she almost had died of a bloodpressure-drop, she was put on ECMO. For us, that looked like a success. Up and down she went, and our emotions with her. She was on ECMO for a long time. Nurses started to ignore us... like they were already giving up.

After almost three weeks the system became blocked by colonies of bacteria, so the membrane was exchanged. A few days later the whole system failed and a complete new machine replaced the old one. After that it went better, surgery was scheduled and hernia repair was done. Two days later she was off ECMO, on the ventilator. On may 28 suddenly her lungs went back to the stage they were in at the start of the ECMO. She could no longer take the oxygen from the machine, that was puffing like a steam-engine on high speed. There was no way back. Suze was at her end. In the evening we were taking out all the IV's and getting her ready to hold her in our arms for the first time and for the last.

It was special. All the children on the ICU were silent at that time. Where normally one could hear all kind of alarms there was a complete silence. As if the other children felt this was time to say goodbye to Suze.

She too stayed at our home for a few days. For the first time we had a funeral with more than us two attending. A few people, good friends and some relatives visited the hospital, they were invited to say goodbye and to be with us sending Suze on her long voyage.

Telling all this still brings tears to my eyes. I hope I am doing the right thing telling all this right away and not holding back a lot. While writing I thought about it a lot: Push the send button or not...Well, when you've read this I guess I did.

When people are asked what they would prefer, a baby boy or a girl, most of them would say I don't care as long as it is healthy. Maybe you can understand by now that I wanted a baby girl more than anything. In September 1996 we were blessed with our pride and joy Rozefien. A non-existing name, containing both a rose and the name of the academic childrens hospital, Sophia. For she flowered from the same hospital where our other girls died. Believe me, she has the spirit of all her sisters combined in one. A better monument for them is unthinkable.


Written by their dad, Onno Zwart (The Netherlands)
1999