Our story so far.

After trying for a long time to conceive, and a couple of misscariages along the way, we finally got our chance the winter of 2014. In the end of January 14 we found out that we were expecting a child. The first months went by slowly, but when we finally crossed 12 weeks we got our hopes up. Before this time we had two ultrasounds and got to see our tiny little bean.

Friday 2th of May (16+5)

By sort of a coincident we got a extra ultrasound at the hospital in Molde this day. This was two weeks before our planned routine scanning. What happened during the ultrasound is sort of a blurr. But the midwife giving us the ultrasound had to go get a doctor so that they both could look. They informed us that our baby had the intenstines outside the abdomen. We had no experiences with this, and didn’t really understand. I belive my first question was if I still could give birth vaginally. The doctor called St. Olavs hospital in Trondheim, where the national senter for fetal medisin (NSFM) is, and we got an appointment the following Monday. First when we left the hospital the realization hit us, that our child had a deformity. The weekend following was the longest weekend we’ve had. We google-ed a lot, and we tried to read as much as we could. At this time we didn’t know if our child had gastroschisis or omphalocele. We hoped with all our hearts that he would have gastroschisis, as we had read that omphalocele very often was combined with grave chromosome defects. Insted of trying to describe the difference between gastroschisis and omphalocele I will share two pictures.

Gastroschisis:

Omphalocele:

Monday 5th of May (17+2)

This day we had our first appointment at NSFM in Trondheim. Shortly after arriving we were shown to a private waiting room. There we had to wait for over an hour, bacause the midwife and doctor had a busy day. The waiting time was long, but I’m glad we were there together. First our midwife (a very pleasant lady) gave us some information about the plan for the day. Then we had two ultrasounds. As a precaution they always have two doctors giving a ultrasound, so they sort of control each other. It was under the first ultrasound that we for the first time heard that our child had an omphalocele. Now there were two risk factors they looked at for determining if it was likely that the fetus had a omphalocele caused by chromosome defects: 1) The location of the omphalocele. A central omphalocele (centered around the belly button) is in 69% of the cases*** combined with chromosome defects. A epigastric omphalocele (streching from the belly button up to the chest) is in 12,5% of the cases*** combined with chromosome defects. And luckely our doctor informed us that the omphalocele was epigastric. 2) The combination of a omhpalocele + another defect often meant that there was likely a common underlying factor (i.e. chromosome defect). The doctors couldn’t see any other signs of defects og deformity (which was a very good sign). But they both looked at the heart for a very long time, because it had sort of twisted out of it’s normal position. They couldn’t see anything wrong with it, but it had twisted about 90 degrees. This probably came from the pressure in the body caused by the omphalocele.

After the ultrasound they took a amniotic fluid test, to test for chromosome defects. They used sort of a ultrasound device with a hole in. Through the hole they put a very long needle into my stomach and uterus. It took no time at all, and was no more painful than taking a blood test. After the procedure they told me to take it easy for the next 24 hours, and informed me that I might feel some cramps. Now we had to wait for the result of the test.. Wednesday couln’t come quick enough.

Wednesday 7th of May (17+4)

We knew that some time during the after noon the doctor would call us with the results. I sat with the phone in my hand almost the whole time from twelve o’clock.. The quick result of the amniotic fluid test could tell us if the fetus had trisomy 18, trisomy 13 or trisomy 21 (Downs syndrom). 72% of the omphalocele cases with chromosome defects had trisomy 18***, and that is a VERY serious defect (only 5-10% will survive the first year****). So you might imagnine that we were anxious when we waited for the call. At 15:24 the doctor called. Luckely our little one had none of the three defects, which are the most normal ones. We are still waiting for the result of the whole chromosome test (takes about three weeks). As a extra bonus she told us we were expecting a boy. <3

Wednesday 14th of May (18+4)

This Wednesday we went back to NFSM to get another ultrasound and to meet more doctors. All in all we had two ultrasounds, given by two different doctors again, and got a lot of time to see our boy. Once again they spent most of the time looking for other defects and studying the little heart. They assured us that the heart looked perfectly normal – appart from the fact that it was twisted. To this day we don’t really know if the heart-issue is something that will fix it self, or if it needs surgery. We got one picture of our little guy. The head is on the left, and the back is up. I the middle of the picture you can see his omphalocele.

Then we met with a lot of people and got a lot of information. A short summary:

– The surgeon: he informed us of the most likely prosedure after birth. It’s something called a silo (sort of a bag) that they sew to the abdomen where the intestines can lie inside. Over time they will press the organs back in to the body. This would most likely take about a week. All in all he thought we would be staying in the hospital for about a month. The surgery will be taking place right after the c-section.

– The pediatrician: she informed us of the intensive care ward for newborns. Our boy will be staying there his whole stay. The first time he will lie in a incubator while they have the silo sewn to the abdomen. She said that he would be in a lot of pain, so they will sedate him so that he sleeps for as long as he needs the silo. After that they will start slowly with feeding. Hopefully it won’t take to long before I can breast feed him.

– Social worker: she will be helping us through the process with all that is not medical. She informed about our stay in the hospital and money issues. Both Steinar and I can stay in the hospital before and after delivery. First we will stay in the newborn ward (without our boy..) and after that we can stay in the hotel connected to the hospital. I can stay there for free as long as our boy is in the hospital. As long as our boy stays in the hospital I will get attendance-allowance (pleiepenger) that don’t affect the parenthal benefit (foreldrepenger). First when he is well enough to go home we will start taking from the parenthal benefit-found. This sounds like a great deal. At least I don’t have to worry about “losing” all my parenting leave (foreldrepermisjon) if we have to stay in St. Olavs for a long time.

Friday 16th of May (18+6)

This was the actual date of our planned routine scanning. We were at the hospital in Molde and got another ultrasound. They took a lot of pictures for us. Here is a couple of them. It the second one his is sucking his thumb.