What's normal anyway?

There’s a lot they don’t tell you about pregnancy and parenthood. I had no idea bleeding noses and headaches were standard practice. Or that morning sickness would feel like the worst hangover I’ve ever had spread over 7 weeks. They didn’t tell me that I would become an expert in disguising a dry retch, or that a line would develop like a perfectly straight freckle down my belly.

They also didn’t tell me what it would feel like to discover that our 25 week old unborn baby might have serious problems ranging from heart defects, missing parts of her brain and a left eye which some radiographers thought might not even exist. They didn’t tell me the depth of sadness I would feel knowing my baby girl would not be a normal “healthy” baby. Everyone says when the baby is born that they don’t mind if they’re a boy or a girl, as long as they are healthy. I wasn’t told to expect that my baby might be one of the few who are not healthy.

Another experience they might have told me about, but you just can’t imagine it until it happens, is the absolute amazement I felt when I first felt her kick.

Since finding out we were having a baby 26 weeks ago we have been on an extreme rollercoaster with some beautiful highs and some extreme lows.

Last week was one of the lows.

We had an appointment with Wellington Hospital to see yet another radiographer and obstetrician. The week before we had had what we thought was going to be a “tick the boxes” 24 week scan to check our peanut’s heart, and then we were being referred to the real specialists to see about a possible hole in her heart and a potentially missing left eye.

Lying on the bed for the scan I looked up at the screen and saw her face in 3D. She was moving her mouth, sucking in amniotic fluid, practicing the movements she would need for the real world. She was blissfully unaware of the attention being directed at her and continued to squirm and flinch, making the radiographer’s life difficult. We saw her little heart fluttering on the screen. Wings beating rhythmically, the four chambers seemed intact and functional. I looked hard at the screen and tried to see what they were seeing. Where was the hole? I searched and searched the screen to see what they were seeing. This was the only baby I had seen in a scan, so what was normal?

We were introduced to the obstetrician and taken next door to talk over the results.

We were expecting to hear about a hole in her heart. I had done some research, thank you Google, and felt pretty positive about the implications and what could be done for babies with this kind of problem.

Instead we were told she had

  • A right sided aortic arch (which I would hear as right sided aorta, causing all kinds of distressing google searches that afternoon)
  • Potential atrial septal defect (the hole in the heart we had been expecting)
  • Missing cavum septi pellucidi (part of the brain that connects the left and right sides)
  • Underdeveloped left eye which could be due to a number of factors including a tumour or Microphthalmia anophtahlmia coloboma or MAC (I thought university’s had a lot of acronyms, I had not seen nothing compared to medicine).

In addition to this shopping list of issues we were told that while these things could be independent of each other, they could also be part of an underlying genetic syndrome.

In the space of 15 minutes our little girl went from a normal baby with a potential heart problem, to a baby with heart, brain and eye defects. We were, however, told some reassuring things:

  • She is a normal size
  • Her right eye looks perfectly formed and normal
  • The right sided aortic arch by itself can be a non issue
  • Everything else looks fine.

Somehow you only hear the negatives and I left that appointment hearing “a tumour cannot be ruled out” playing in a loop over and over in my head.

We left that consultation in a state of shock. I felt hollowed out. Gutted.

What they also don’t tell you about pregnancy is how your emotions are at the whim of your hormones. The worst PMS mood swing is nothing in comparison to what pregnancy does to me. On a good day I can cry at Shortland Street, and an ad for life insurance in one minute and then laugh hysterically during a round of Boulderdash, without skipping a beat. If you ad to that emotional melting pot the possibility of a sick baby, you get a mess. A snotty, slightly hysterical, vaguely irrational mess.

My poor partner was left to support himself as I wallowed in the news. I was in a wash of overwhelming emotion and everytime I replied to a concerned text, talked to anyone about it, or even read a kindly email I was reduced to tears.

My partner had gone into the appointment worried about her heart, and felt relieved that it didn’t seem to be a major issue anymore. I, on the other hand, had gone in thinking yes, she might have a hole in her heart, but it’s very common and they can treat it, and was instead faced with myriad other problems I had not known would be there.

I have never thought I was inclined to depression. But in those few days after the appointment I felt the weight of it crushing me. I knew if I didn’t pull myself up sometime soon I would be heading down that road. The road where you’d rather stay at home, even on a beautiful day, when you turn down offers of friends to meet up and where even the prospect of talking about our baby seemed too much.

After 2 days or so it did seem to lift. I lost the overwhelming sadness and it was replaced by a sense of needing to protect this baby. Then we got a call from the hospital saying they wanted to see us the following week with someone from the genetics team. My thoughts immediately went to whether they had found a syndrome or disease that might match out baby’s symptoms. The internet proved useless on this one. I typed in all kinds of variations on “eye problems, right sided aortic arch” and got nothing. I stopped googling after a few days and just decided to wait.

We would find out in a week if our baby’s conditions were connected or not. If she was one of the special 1:10,000 who had a genetic condition, or if her defects were unconnected and merely a coincidence.

0 thoughts on “What's normal anyway?

  1. Skubala

    I’m at a loss for what to say other than wishing you and your baby all the best. The anxiety you are dealing with only compounds all those “normal” pregnancy hormones and complaints. The uncertainty of what next, what if, will not go away and it is such a helpless feeling knowing that all you can do is wait and pray that your baby thrives when she is born. I’ll be following your blog. I can’t change anything for you but I can read it so you know you are not alone.

  2. Bonnie Dewart

    I think this blog will be of great use for anyone in this one in ten thousand situation. I’ll be reading your blog and following your journey.

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