Our day started out fairly normal. My husband and I woke up, ate breakfast, and got ready for our 21 week anatomy scan. We were about to find out if our baby was a boy or a girl! Our original appointment had been postponed a week due to a snow storm, so we were more than ready to know.
At the appointment, the ultrasound tech gave us the exciting news that we’re having a girl! We were ecstatic! We thought everything was going pretty well until our doctor walked into the room and said “The ultrasound is not what we want to be seeing.” My heart dropped. He explained that our little girl has hydrocephalus, or too much fluid in her brain, and that we would be referred to a high risk specialist. The rest of the appointment passed in a blur. I don’t remember that much except that it was our first appointment where the doctor never smiled.
I cried the entire way home, trying to wrap my head around how everything could suddenly go so wrong. Every appointment prior to that had gone well, and I’d had a fairly easy pregnancy thus far, so how could something this serious suddenly come up? I spent the following days obsessively googling hydrocephalus, even though I know that’s not recommended. What I was seeing wasn’t pretty. Most websites gave us dire statistics stating that our daughter probably won’t be able to walk or talk, and that even if she can, she would be severely handicapped. I was really angry at first. This was supposed to be a happy milestone! We were supposed to be picking out baby girl clothes and choosing a girly nursery theme, not finding out that something was very wrong.
Five days later we went to our appointment at the local children’s hospital with the high risk specialists. They performed another ultrasound, and the technician was super friendly and made us feel at ease. She was upfront about Aria’s condition, but she also explained to us everything that we were seeing. Afterwards, a team of people filed in to the small ultrasound room to go over the results with us, which were unfortunately not what we wanted to hear.
Aria’s hydrocephalus is considered severe. Her ventricles (fluid filled cavities in the brain) were measuring 18 and 23 mm. Normal ventricles should be between 8 and 10 mm. Due to the increased fluid, her head is measuring two weeks ahead of the rest of her body. The risk with hydrocephalus is that the increased fluid increases pressure in the brain and can cause brain damage and/or prevent the brain from completely developing. The fact that her hydrocephalus is present so early is a bad sign because that means there is less time that her brain has been able to develop without the extra pressure. However, there is no way for the doctors to know just how severe the damage is until after she is born and there is no way for the doctors to treat her until after she is born. It is basically a waiting game.
Thankfully, because I had spent so much time researching hydrocephalus, nothing they said was a surprise and I handled things sooo much better than when we first got the diagnosis. As soon as they told us the ventricle measurements, I knew everything that would come next, and was able to stay clearheaded throughout the entire appointment. The one time where googling was actually a good thing!
Going forward, we are going to have a fetal MRI and meet with a team of doctors that will work with us after Aria is born. Hopefully they can give us a bit more information and we can come up with a rough plan of care. But for now, we just have to trust that God is in control and is at work, even though things are not going how we want them to.
Life With Aria 