Nederlandse
versie:
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Tuesday 24th December 2002 (13
weeks)
We're going to the
hospital for an ultrasound because we are participating in Generation R. But for fun also: a nice
opportunity to wave at our baby. In the first five minutes it is great fun
indeed. We can see the baby immediately and it's quite lively. Finally, Mirjam
says: “Luckily, there's only one!”. But the lady that operates the
ultrasound does see something extra and takes a print-out to show to another
person.
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The other person turns out to be the gynaecologist and she makes even more
print-outs. They're not twins, but there is an abnormality. The abnormality
which we now can also see clearly, is some sort of balloon that is connected
to the baby's belly. It is almost as big as the baby's head. In her room the
gynaecologist explains to us that this balloon can be one of two things: gastroschizis of
omphalocele. We must go to the
Erasmus MC after Christmas to have a 'structural' ultrasound, in order to
determine which one of the two abnormalities we are faced with. |
We are quite startled
by now, but we still have to see the Generation R nurse. The blood test for
Mirjam is cancelled.
At
home, we immediately start looking for information on gastroschizis and
omphalocele on the Internet. Very soon we have
found a lot of information on omphalocele (a bit less on gastroschizis) and
we're frightened by it considerably. Omphalocele is often associated with other
physical abnormalities and with chromosome defects that often result in very
severe physical and/or mental handicaps.
What to do? We wanted to tell our families the happy news over Christmas, but now the news is much more complicated and a less happy story. We eventually decide to inform our closest relatives by telephone, in order to prevent the shock on Christmas day.
It is good to be
surrounded with family now. On Christmas day I cook dinner for the whole family
at my grandparents' house. Mirjam is lying down in bed for most of the
day. John (my brother) is helping me a lot more than other years to replace her.
Everybody still
congratulates us, and that's nice. We are also still very happy that
Mirjam is pregnant, even though the pregnancy is surrounded by doubts now.
Boxing day we are in
Friesland at Danny & Wil's house. All our little nephews and nieces are
there too. It is easier for us than we thought, all these little ones
surrounding us. They're such sweet kids.
The
day after that we go to Drachten at Anne & Grietje.
Now the 'Beppes' also know what is the matter with us.
Furthermore
we've called Henry and asked him to inform our other friends. We were planning
to celebrate New Year's Eve at our house, but given the circumstances we thought
it wise to change plans.
Monday 30th December 2002 (14
weeks)
Structural ultrasound
in Erasmus MC. In
the waiting room for the gynaecology department we see a lot of couples with
with dejected faces. Everyone here is facing a problematic pregnancy. Not a very
cheerful environment. Two female doctors are carrying out the examination. They
explain to us that they will initially will look very carefully and not speak to
us.
Finally
it is clear: our baby has an omphalocele.
Furthermore they have checked prolongedly for other physical abnormalities,
especially with the heart and kidneys. But because of the fact that our baby is
so small, they cannot tell us that there is no abnormality with the heart. The
kidneys aren't even visible yet on the ultrasound.
They want to see Mirjam again in two weeks from now for another ultrasound and an amniocentesis. We ask whether an amniocentesis is also necessary when we don't want to terminate the pregnancy in the case of a handicapped child. The doctor explains that some chromosome defects (in particular trisomy 13 and trisomy 18) come with very low life expectancy. In those cases the baby would not live to be 1 year and would probably die within a few days.
This story makes quite an impression on us because we never could have imagined such grave abnormalities to exist. We agree on the appointment for the amniocentesis, but are still able to cancel it. We can think about it in the two weeks ahead.
Tues
To make matters worse,
both Mirjam and I fall ill quite considerably. But we still decide to meet our
friends on New Year's Eve at Ilja and
Kees's house. We drink orange juice and children's champagne the whole
evening. Well, we're driving anyway. The first days in the new year I fall really
ill and it lasts until Monday before I'm on my feet again. On that day I'm
sending out an E-mail to all of my colleagues at work to inform them about our
situation. It is to tiring to tell the story to everyone personally. After
people know the basic story, it is easier to talk about it. Mirjam has similar
experiences.
That does not mean of
course, that we don't want to talk about it! We get tremendous support from all
the phone calls, E-mails, postcards and other displays of sympathy. But it is
quite a task to inform everyone. Hopefully this website will work….
Subsequently everybody can just call and mail us.
M: Otherwise I keep getting more visibly pregnant all the time. I really have only one pair of normal pants that fit, so I've bought some 'maternity pants'. In these weeks our little 'frummel' grows almost 4 centimetres per week, it's almost as if you can feel it. In case you didn't notice, we try to enjoy this pregnancy as much as we can. In spite of all the tensions, we manage quite well.
Another
ultrasound examination
in Erasmus MC. The whole weekend was quite stressful, because insecurity is one
thing, but security about something terrible is not a whole lot better.
The
ultrasound gives the best possible result: no further bad news.
The heart is looking good and the kidneys and bladder are now clearly visible
and look all right. The hands and feet of our little 'frummel' have five fingers
and toes and they look normal too. Apart from that they cannot find other
abnormalities. That does not mean that there are no abnormalities, but when this
baby would not have had an omphalocele, the conclusion would be that everything
was all right.
An appointment is made
for us with a paediatric surgeon, for after the first results of the
amniocentesis. Then we can inform ourselves about the possibilities and risks of
the treatment of omphalocele. That is useful information, especially when other
complications might be revealed (e.g. from the amniocentesis).
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The
omphalocele does contains at least some bowel and the stomach. Because of
the size there is a strong suspicion that it also contains the liver (maybe
only partially). On the ultrasound you can clearly see the stomach (the black
spot in the ball to the left). |
We continue our route
through the 'medical carousel' to the amniocentesis. This is not very pleasant
because the needle does not suck up amniotic fluid initially. Only after a
painful 30 seconds they succeed. Mirjam is slightly wobbly and has to recover in
a hospital bed for half an hour. In one and a half week from now (on Wednesday 22nd
January, late in the afternoon) we get the results for the most common
(and most severe) chromosome defects. The full results will take 3 weeks. Our
worries will not be ended for at least some more time.
Tuesday 14th - Thursday 16th
January 2003
It is great to
experience such enormous support. Lots of phone calls, E-mails and postcards,
it's helping us enormously. People often tell us that they don't know what to
say or do. That is understandable, it is almost beyond comprehension. The only
thing we can do is to stay as optimistic and hopeful as we possibly can. That
helps us through.
Contacted a mother of a
child of almost 6 years that was born with a giant omphalocele. The boy is now
as healthy as any 6-year old, but it has been difficult, especially the first
year. Still it is great to hear these positive stories.
One
day later I have some more reactions by E-mail. Another couple had decided to
terminate the pregnancy because of the omphalocele and
associated complications. That happens too.
Anyway, we are informing
ourselves as well and as broadly as possible. We are still researchers even in
these stressful times.
This
was supposed to be a stressful day. But Mirjam arrived
home from work yesterday evening (Tuesday) about 7 o'clock and there was doctor
Wessels on the phone. The partial results from the amniocentesis are back: there
are no abnormalities with chromosomal pairs 13, 18 and 21.
So,
again the best news possible, and a day earlier than expected too. The
aforementioned three chromosome defects are the most common and have (in the
case of trisomy 13 and 18) very serious consequences. But the complete results
are not due until Monday 3rd February. So, it will remain stressful, but we have
taken a serious hurdle with the three of us.
Furthermore,
on the 3rd of February we also have an appointment with the pediatric surgeon to discuss what are
the (im)possibilities in the treatment of the omphalocele. After a lot of phone calls
between the secretaries of the gynaecology and paediatric surgery
departments (and Mirjam) the following appointments were made: firstly an
ultrasound at 9.15 o'clock and the appointment with the paediatric surgeon at the
Sophia Children's hospital at 11.00 o' clock.
Monday
3rd February 2003 (19
weeks)
Ultrasound at Erasmus MC hospital. The results for the amniocentesis aren't available yet. No new abnormalities appear from the ultrasound. The spine is OK. But our 'frummel' is not positioned right and the doctor cannot see the heart properly. She stresses several times that this omphalocele is really big.
On the one hand, this is not the result we've hoped for. We hoped for sufficient information today. Sufficient for concluding that there really is going to be a baby in our life. But that amount of clarity cannot be provided. On the other hand, there's no bad news and we really enjoy looking at our very lively and sufficiently grown 'frummel'.
Our appointment with the paediatric surgeon is delayed a little (about one and a half hour). But eventually we have a pleasant meeting with Dr. van de Hoonaard. She cannot tell us many new things, because we have acquainted ourselves thoroughly with the relevant literature. There are two possibilities: either the omphalocele is 'small' and then surgery can be performed shortly after birth or (in our case) the omphalocele is 'large' and then, in the Netherlands, the 'conservative' treatment is generally preferred. The conservative treatment implies that the omphalocele is bandaged and subsequently they wait for the skin to 'grow over' the omphalocele. Before the omphalocele is completely covered with new skin, several months will have elapsed. At the same time the baby grows and gradually the intestines fall back into the abdominal cavity. This process can partly take place at home. Eventually (after about a year) the abdominal wall will be restored surgically, so as to prevent the intestines from bulging out and to have them better protected than only with skin.
The most important complication that can arise is that a giant omphalocele like this one pulls the abdominal and thoracic cavities too hard (traction), resulting in an underdevelopment of the lungs.
All in all it will be a difficult process but with good prospects. At least when there are no abnormalities besides the omphalocele. But that is still not entirely sure.
Next Monday we'll have another go. Yet another ultrasound to look at the heart and hopefully the results of the amniocentesis will be back by then.
We wanted to wait for complete information before we would throw ourselves into the 'baby world' and buy everything we need for the baby. But this afternoon we've bought our first pair of baby socks for 'frummeltje'. Non-skid of course.....
Hurray! Everything is all right!
The complete results of the amniocentesis are good. And no anomalies can be found with the heart. When our little 'frummel' would not have had an omphalocele, there would be no reason to worry.
| They had a new ultrasound machine. The doctor still had to get used to it. But she can make great pictures with it. In our perception they look sharper then the earlier ones. Clockwise: the face with the nose, a little foot with five toes and an ear with the shoulder to the left. The question remains: is it a boy or a girl? The answer will be announced somewhere in June! |
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The state of affairs at the moment: our little 'frummel' grows at a steady pace and as far as we (and the doctors) know there are no anomalies to the heart, brain, kidneys and lungs. Every hand has five fingers, every foot five little toes. The spine is perfect.
The only problem is therefore the omphalocele. The 'balloon' contains stomach, liver and gut. The omphalocele is very big (giant). Despite this, the delivery will be 'normal'. The ('conservative') treatment of a giant omphalocele takes quite a long time but the prospects are good. The risks with this treatment consist mainly of infections and respiratory problems.
We are of course extremely happy: we're going to have a baby! Now, the only choices that we have to concern ourselves with are choosing the colour of the clothes, wallpaper and other baby-stuff!!
Monday 17th - Friday 21st February
We are on an island! Look here!
Actually, life takes its 'normal' course now. We are both working again. Of course, we have some worries (some big, some small) about our little 'frummel', but generally, we are quite optimistic.
Mirjam gets her checkups in hospital now, with the gynaecologist. She had her blood examined (again) and the result was that Mirjam did not have antibodies. She was at risk for that, because of her blood having a negative rhesus factor and her having the amniocentesis. Luckily, everything was all right.
The baby-stuff is piling up steadily. The baby carriage is already standing in our living room, shiny and new. The number of cuddly toys is already enormous. The same for clothes in the smallest baby-size.
The refurbishings in our future bedroom are also progressing steadily, thanks to Ilja and Marian. All of the old paint is now gone from the window frames. Now 'all we have to do is': sanding, base-painting, sanding and painting! Then we can move and our 'old' bedroom can be changed into the baby room. That won't be a lot of work luckily.
Together we've started the course 'Samen bevallen' ('Delivering together'). Many people think it's hilarious that the expecting father should be present at all 9 meetings. But it is great fun to do this together.
A very favourable development is that we have found a day care centre that is especially equipped for children that need extra care. So when our little 'frummel' comes home from the hospital and we are eventually used to being parents, childcare is available, which is suited for any extra medical attention that might be required. Although we are not certain, whether we want to bring our 'frummeltje' to a day care centre, it is a comforting thought to know that this day care centre exists.
In the coming week, Mirjam will have her regular appointment with the gynaecologist, we'll go to our second 'Samen bevallen' meeting. And we'll continue the refurbishings and buy lots of baby-stuff. We'll take it easy, because Mirjam is easily getting short of breath because of her beautiful big belly.
Some messages: We've bought a cradle, and a rocking chair! The main purchases have been done, only some little things have to be bought now.
Our friend Marian brought an article in Monitor (the Erasmus MC magazine) to our attention. It's about an omphalocele baby and does accurately show how these babies are treated in the Sophia Children's Hospital. I've scanned it and placed it here on the website.
Nowadays, the worries tend to take over a bit more. Especially, when, at a regular visit to the gynaecologist, it becomes clear that Mirjam's belly isn't growing as rapidly as we would expect. The stress caused by this essentially innocent message, leads Mirjam to take leave from work as of immediately (April 23rd). Luckily her colleagues (including her boss and the company doctor) at work react wonderfully understanding.
Our picture (together with 5 other couples) was taken at 'Samen bevallen'. As soon as it arrives I will place it here.
Another worry is that our little 'frummel' does not kick as often and as hard as earlier. Last night (22nd/23rd April) Mirjam worried so much, that we decided to call the hospital. We were told to drop by in order to make a 'hart film' of the baby.
We were relieved as soon as we heard the heart. We listened to the heart sounds (150 bpm) for half an hour and it was registered on a graph, just as was the muscle activity in Mirjam's belly. Now, Frummel made his/her presence very clear to us and kicked a lot.
After half an hour, a (sleepy) doctor looked at the results, informed us that there was nothing to worry about and also did an ultrasound. With it, she could see that Frummel is as big as any 30 week old baby. We almost felt guilty that we worried so much, but both the nurse and the doctor emphasized that, when we are worried, we should contact them or drop by the hospital immediately.
We went back home and put Mirjam to bed (half past seven). No working for her today. She can wrap up work matters tomorrow too and then start her extended leave with sufficient peace of mind.
On the 28th of April we 'registered our partnership'. This is legally the same as marrying, but without most of the emotional connotations. We were planning to do this much earlier, but never actually got around to it. So now we did, without much hassle, just with the two of us on a Monday morning in Barendrecht. Afterwards we spent two days in Amsterdam. Had a very nice dinner and slept in a wonderful hotel. And we went to the 'Rijksmuseum', on the day before it was closed down because they've found asbestos.
On Friday the 2nd of May we had another appointment with the gynaecologist, this time with dr. Wildschut. He did some routine checks and also a quick ultrasound. Our 'frummel' is growing sufficiently and is exactly on the average growing curve. Afterwards we got a tour of the maternity ward where the actual birth will take place. The nurse took plenty of time to show us everything, including the delivery room, the one-way-mirror and the small room where they will 'stabilize' our little 'frummel' directly after birth. She also explained the possibilities for pain medication during the delivery. She emphasized that asking for pain relief is very normal (not all (para)medical professionals in the Netherlands think likewise when it comes to giving birth). This is a reassuring thought for Mirjam.
On Monday the 5th of May we were in the hospital again, this time for a 'structural ultrasound' examination with dr. Wessels. She recorded images on video extensively. The video images will be used to discuss our case with the team of doctors involved (e.g. gynaecologist and paediatric surgeon). She again established that the omphalocele is extremely large and that all of the liver is contained in the omphalocele. This is not bad news (we knew this already) but these findings confronted us with the gravity of the situation once again.
Later that day, dr. Wessels called us on the phone and let us know that we will be scheduled for another appointment with the paediatric surgeon, dr. van den Hoonaard, to further discuss the treatment of our little 'frummel'. Discussing ways to tackle the problem is, hopefully, better for our peace of mind than looking for more problems during an ultrasound.
And further...Mirjam has stopped working now for over a week and is thriving on that new situation. She is making lots of lists: what we still have to buy (not a whole lot anymore), what we still have to do around the house (a substantial number of things), who has to receive a 'birth-card', etc.
On May 15th a regular appointment with the gynaecologist. Dr. Brandenburg has seen the video-recordings of the week before. She tells us that the omphalocele is indeed enormous, but that does not change anything for the delivery. So it's going to be a planned delivery in the hospital but not with a C-section. Furthermore the does a quick ultrasound (we've lost count of the number of ultrasounds by now) and we can see that our little 'Frummel' is lying with it's head downwards and moves about happily. She also tells us that the delivery is planned from 37 weeks of pregnancy onwards. That is a week earlier then we were expecting. Our next appointment with the gynaecologist can only barely be planned before it.
After lunch we head for the Sophia children's hospital for our appointment with the paediatric surgeon, Dr. van den Hoonaard. She also emphasizes that the omphalocele is huge. The doctors are concerned about our little 'Frummel's lungs. Omphaloceles of this size almost always cause respiratory problems and babies will more than likely have to be ventilated with a machine.
Mirjam asks, which and how many tubes will be attached to our baby. They will be many: One tube for the ventilator, a tube for the drip for feeding and medicine and a tube for removing air from the stomach and gut. Furthermore, a device to take blood from (so that they don't have to stick 'Frummel' with a needle every time) and of course a whole bunch of stickers to monitor the heart and other vitals. It is clear that there is going to be a lot of tubes, just as with the girl in this picture. We leave the hospital with an optimistic and positive attitude nevertheless: it's going to be tough and complicated but in the long term the prospects are good.
In our house things are coming together now. We've painted the woodwork in our own new bedroom (thanks to Marieke and Marian), our bed has been in place for a couple of days now (thanks to Danny & Wil) and last Saturday we have put wallpaper in the nursery (thanks to Janneke). Afterwards we've furnished it immediately. With our new digital videocamera (also thanks to Danny and Wil) we can show pictures: see underneath.
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The cradle |
The cradle and the wallpaper (and Mirjam, next to the cradle) |
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The bath and Tiger Too |
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Mirjam is finally starting to grow as
big as she wants to be. One minor drawback is that she has all sorts of
little pains to go with it and moreover she's retaining water..
But as we can see on the left, she's keeping a smiling (and pretty) face. Furthermore it's nice and quiet. We're finishing some details in the nursery (painting a cupboard, hanging curtains, etc.) and thoroughly enjoy the nice weather of the last few days. It's a pity for Mirjam that our little 'Frummel' does not always agree with to much sunbathing. The hammock is used frequently, Mirjam can easily get in but can barely get out. Monday May 26th we had our last ultrasound. Everything was OK and little Frummel is ready to jump. Just like last time the head's down and now it's lying a lot deeper. So deep even, that the doctor could hardly measure it. |
Now we only have an appointment with the gynaecologist and those appointments are increasingly focused on the delivery. We can still not tell anything about the exact datel. Even if we could, we would keep it quiet to prevent unnecessary stress with future grandparents, great-grandparents, uncles, aunts, etc.
But rest assured: when little Frummel arrives, everybody will be informed as soon as possible. The cards will be ordered (with the printer) shortly, as is the internet-domain.
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It has been a quiet week and long
weekend. We have slept late and diid very little. Luckily the weather is
somewhat less 'sticky' now.
Yesterday, we have eventually bought (a 2nd hand) maxicosi. We got several offers to take over or lend one, but we finally fell for the cow-print on this one. |
Furthermore we'll quietly await the next appointment with the gynaecologist. Then will be decided whether Mirjam is ready for the delivery to be induced. When that is the case we'll subsequently make an appointment in the hospital.
This is our final update of Frummeltje's diary. Within a week or so (maybe less) from now, Frummeltje will have a 'real' name and a new website. All the people that have sent us E-mails or supported us otherwise, will be notified of the new URL.
We want to stress that after the birth, we want to enable everybody to come and admire our baby. Due to the expected medical circus that might not always be easy. But everyone will understand that, hopefully.
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We would like to thank everybody for the support we have received in the past 6 months. We can surely use that support also in the months to come. This website has been a source of comfort and support to the both (or 'the three') of us. Firstly, by simply writing down our story and secondly, by all the warm-hearted reactions our story elicited. Family, friends, colleagues acquaintances but also complete strangers have all supported us in various ways through responding to this website. It's like someone said: 'Frummeltje is already bringing people together!'. By now, we have noticed that we are not the only people that benefit from this website. Other expecting parents of omphalocele babies have found their way to this website too. We look forward to the months to come, anxious but confident. We'll be in touch! Ronald, Mirjam and Frummeltje
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