The Bad Day

The 8th of March was Adams birthday, poor hubby, no presents from me as I had been a bit busy. The day got worse.
We had to go to see my midwife for the 10 day after birth check, so off we went together so that Adam could look after Eva during the appointment. While we were in the waiting room I got a phone call from Vall D'hebron Hospital. It took me by surprise that someone was phoning me from a hospital and so it took me a while to focus but basically they were saying that I had to take Eva to hospital the next day because one of the Heel Prick test results had come back "bad" and it needed further checking. The man said that the tests would take most of the day so to have the day completely clear. I checked we were talking about the same baby as I was unbelieving that something was wrong with mine. I asked if I should be worried and he said " well, nooo." not very convincingly. He did not however tell me what they suspected was wrong.
I went back into to tell Adam and it was all very surreal, something was wrong with Eva!

We went in to my see the midwife and then still shell shocked we went home. We then had to go and see Evas pedeatrician for the first time, we had made the apointment for the 9th but now we were going to be otherwise occupied. And, now it was snowing!
It had not really snowed in Barcelona for 25 years but today it started and did not stop.
We trudged off to the doctors through the snow. The appointment with the pediatrician went well, no problems but they could not shed any light on the next days happenings.
The snow had got worse and getting home was interesting, sliding all over the place on the icy bits wasn't fun with a baby on your front. Poor Adam, is birthday was not going well.

Then we heard that the hospital was shut as were a lot of things in Barcelona, they could not cope with the snow.

We had a night of worry, What could be the problem? Could it wait if we could not go to the hospital the next day?
There are three things they test for in the Heel Prick test
1 - Cystic Fybrosis
2- PKU
3- Congenital Hypothyroidism

Well, numer 1 did not bear thinking about, number 2 has an almost impossible diet for life as way to control it and number 3, you are taking medication for life.

On the 9th we phoned the hospital and were told not to come in or call back until after midday. We ignored this and phoned back a 8.55am, 5 minutes before the appointment. They were there and said to make our way there. Fine, but a bit tricky due to the snow.
Having arrived at about 10.30 we did not have to wait as nobody else was coming in to the hospital. They had all had their appointments cancelled, it was snowing and too cold.
Well, better for us, we did not really have to wait too long for any of the tests.
Into the doctors office we went and he started spouting off about the treatment for Eva. Hold on a minute, we still did not know what was wrong. He started to explain when another doctor came in who was apparently our actual doctor who had got in late. So he took over and much calmer and easier to understand he was too.

So, Eva had Congenital Hypothyroidism, CH, the third thing on the list and too be honest the least problematic.
Eva did have a barrage of tests, blood was taken from her head (least painful and easiest way to get apparently), and a gammagram, like an xray but not as powerful, which they had to do twice cause they got it wrong the first time.
For the gammagram Eva had to be held down by three people while a metal plate was lowered to about a cm above her face and then an image was taken (about 3 minutes each time, a long time for a 10 day old). This was to decide if she had a thyroid and if so if it was in the right place etc. She did and it was. Thank god!
Having ascertained that Eva did indeed have a thyroid it was a question of deciding whether it worked or not. Was the first test dodgy? So, they sent off the blood for testing and it came back, (that same morning), as still being a problem. That being the case we were then in to treatments.

With Hypothyroidism what the doctors need to do is replace the hormone Thyroxin which is what your thyroid would normally produce. In a baby's case that may start at only 7 drops of a liquid, they are not big enough for whole tablets. The medication is very precise so it has to be in drop form at this young age.
If CH is caught and treated early then there should be no further problems other than taking the Thyroxin. If, however it is not caught it can lead to severe developmental problems in the child concerned, with the fabulous name of "cretenism".
Unfortunately the symptoms of CH do not show themselves until a child is about 3 years old, and by then it is too late to treat. It has to be caught early and treated. Thank god for the Heel Prick Test.
CH should not be confused with hypothyroidism in adults. They need the same treatment but the symptoms are tiredness and a puffy face, to give two. But there is no developmental issues, that is only relevant to babies.

So, we left the hospital with a child with CH and a thermo bag with the medicine and an ice pack. The drops that Eva had to take needed to be refridgerated. Fridge? Boat? Opps?
Thankfully we were in the flat with a fridge.

The other thing that we had to do as far as the condition was concerned was bring Eva to regular check ups. Check ups? Cruising on boat? Opps?

But, of course Eva came first, no question, just a bit of a rethink needed.

Now this condition was a 1 in 4000 chance in Spain or the UK, that is only 10 kids per annum in Spain suffer from this. Wow!
However, only 10% of those children have a thyroid, well that is 1. So we were doing well.
There a a few types of CH, the inherited kind which will never go away and the transient kind which will disappear. Obviously you have to have a thyroid to even have a chance at the transient version. Only 10% of those 1 in 10 have a chance of having the transient version and after 4 months it would appear that we may be one of the lucky ones. Eva's drops have been decreasing instead of increasing with her weight gain as they should be, which indicates that her thyroid is beginning to work. Her doctor thinks that her thyroid was just not fully formed when she was born. This is all yet to be confirmed and Eva is still on the drops so back to the story.

We left the hospital feeling like the bottom had just fallen out of our world, or at least I did. I felt guilty, that it was my fault and that on top of having a daughter with a condition I had also screwed up our cruising plans, how were we going to be able to go and deal with this?
Fortunately time helps you get used to things and plans can be altered.
We had had a shock and suddenly had not such a perfect daughter, but do you know what, she became even more special because of it. We spent the first little bit being a bit obsessed, is that a symptom of CH? or is the other a symptom of CH? but you reach a point where you can not keep asking questions like that, you have to live and Eva was wonderful. More importantly, she wasn't asicky baby which would have made the drop taking a whole lot more complicated.
Going to the hospital every few weeks also brought home to us how lucky we were that CH was all we were having to deal with. Some of those children were going through truly awful things.
It also made me really aware of what Tracey is going through with Lorcan and mostly on her own. She is one strong lady and he one brave little man!

So, the day of the 9th ended, we knew what was wrong (thank god we did not have to wait) and now we just had to get used to it.

It was great having my parents in Barcelona, their support was invaluable, and very appreciated. Of course Mummy knew ahead of time that Eva's CH would be the transient type. I wish I had her insight, or hopefullness.

Funny, no photos today, not really the day for it.