Monday, October 5, 2009

Googling and the personal trauma it can cause

NOTE: this was extremely difficult for me to write

I am writing this to get it out, stop having it bottled up, also so I can keep a record.

Googling is a good thing, but when I got an answer that I never thought I would hear, it has caused me nothing but heartache and stress.

I can start by stating the obvious, this hasn't been an easy pregnancy for me, it's one thing after another, horrible morning sickness, severe anemia, gradually increasing high blood pressure and then it being normal all of a sudden, the sciatica which I am seeing an obstetrics physiotherapist for and then the small for dates and Polyhydramnios. I have been asked by midwives at my appts if I wanted to go ACE services at the hospital, which deals with women with antenatal and post natal depression, I keep saying no because I am putting my tears down to Glen not being here and feeling guilty for putting too much on my girls.

It's been difficult for me and I am sure it hasn't been easy for my girls, but they have been an absolute blessing with everything they have done to help make things a bit easier.

When I first got the diagnosis of Polyhydramnios, I was fairly confident that all it meant was excess fluid and that's pretty normal, the small for dates thing concerned me more because Glen is 6'3 and I assumed this little one would be long too, Bianca was 55cm and 7 pound 12, allira was 53cm and 9 pound 3, and everyone says that babies usually get bigger.

So I started googling when I got home. Excess fluid occurs in 1-2% of pregnancies, wow, so I had a 98-99% of NOT having excess fluid, but I fell into the tiny % of women that did get it.
Then I started reading about congenital problems. I felt sick.

I had been assured many times that my baby looks normal, but I had been talked out of an amniocentesis and that is pretty much one of the only ways to be sure of the common problems such as down syndrome. Yes soft markers do show up in ultrasounds, but not all the time. In hindsight I should have had the amnio for peace of mind now.

At this point I was a bit nervous but not a wreck.
I did more googling, specifically small for dates and Polyhydramnios.
I found a website writtten by a director of maternal-fetal medicine in America. He has a list of questions written by women with Polyhydramnios and he takes the time to answer them. Reading through the questions I found a comment that he says smaller babies and polyhydramnios is something to be seriously concerned about as opposed to bigger babies as this is a big indicator that something could be wrong.

So I wrote to him, I gave what I thought would be enough information to hopefully show that everything looked positive.

Hi, I am 37 and now 31 weeks pregnant with my third baby, last week I had a scan because I am measuring large for dates. The scan showed polyhydramnios with a level of 25. There seems to be absolutely nothing wrong with the baby apart from being small for dates, she was measuring as a 28 week baby instead of 30 weeks. We are absolutely 100% sure of when I conceived, so the dates can't be out. I have done the GTT and my levels are fine, so no gestational diabetes. My other two daughters were born at 7 pound 12 and 9 pound 3. I am concerned about her being small when it seems like most people with polyhydramnios have bigger for dates babies. I didn't have an amnio because my NT test had excellent results. I am getting quite upset about this and wondering what could be wrong. Any information you could give me would be wonderful, thank you.

I hoped for a quick reply but a week later there was nothing. Now during the time I waited for a reply I saw my GP who I have been seeing for 16 yrs and my Obstetrician who has women coming from as far away as QLD to see him, and they both said don't worry and I accepted that. My OB did another scan and said my fluid levels hadn't risen so that was a good sign. So after that appointment I felt great, I stopped worrying and felt like my little one is as perfect as I first thought.

But then I got a reply from the Dr in America

To Tania: I am afraid the combination of polyhydramnios, a smal for gestational age baby, and your age scares me a little too. I have seen this situation MANY times where it turned out the baby had an unsuspected chromosomal abnormality such as Down syndrome. If you have not seen a specialist in maternal-fetal medicine, I strongly recommend you ask your doctor to send you to one. Good luck to you and let us know how things turn out.
Dr T

Well... I went from being happy about Glen's Visa approval to an absolute blubbering mess. I was physically sick and my joy at being pregnant went to a feeling of sickness when the baby kicked and moved and I had to take down scan photos because I cried everytime I saw a picture of my beautiful baby. I felt sick thinking about labour and what was going to come out.

All I could think of was this 'expert' said that he'd seen this "MANY" times and there is a problem and not a small problem but a major chromosomal abnormality. I went into panic mode, I tried getting another scan but he's on holidays, I went to see my GP who called the Dr "stupid, stupid stupid" but all I could think of was that I was the stupid one for not getting the amnio I wanted months ago. I tried to see the OB but he was unavailable. I spent days in tears. I didn't want to look at any baby items, here or in shops and when Boo picked up an outfit in Kmart I cried and cried in the store.
My friend Ky begged me to stop googling but I was trying to find an answer that would be different to what he said, and I couldn't find anything that related to small and polyhydramnios.

On Saturday my neighbour asked me how everything was going, and I couldn't help it, I just burst into tears and as she is a midwife I poured it all out to her. She hugged me a lot and said that she has seen many women with a lot of fluid and the most common thing was a Tracheoesophageal Fistula (TEF) which is a swallowing problem and is found and fixed straight after birth, really nothing to worry about. She also asked about my OCD and I said I was a lot better since things in my life had improved, then she asked "are you using any lotions on your body?" and I admitted that I'm not, I don't use sunscreen, I haven't used a moisturiser on my face in months and I rarely even use the special pregnancy lotions that Glen bought me from Belli because I am worried about the ingredients, she pointed out that this is OCD. She asked if I was like this with my last 2 pregnancies and no they were a breeze compared to how I am now.
She said that if I am this anxious then I should think about a ceasarean because my labour wont progress.
She asked why I wont go to ACE services and I admitted to her that I am scared that they'll think I'm crazy and take the baby away from me, she cried and hugged me when I said that :(
It's very difficult to admit my reason and she's the first person I've told that that's how I feel.

Even though I promised not to google anymore, I did one more and made it a more Australian search. And I am glad I did, I wanted to know what normal amniotic fluid levels were, and normal ranges from 5-25! so I am on the higher side of normal! Why have I been so worried! I read a lot of stories on forums, for a condition that only occurs in 1-2% of pregnancies there are an awful lot of stories. There were some very sad stories, but the majority were positive stories and practically all of the women had much higher levels than mine!

I felt like a weight had been lifted off my shoulders and that the Dr in America was extremely negligent in what he had said to me.

Through this I have tried not to involve the girls too much because I don't want them to be upset because of how I am feeling or because they could think there is something wrong with their new sibling.
But sadly I am resenting Glen at the moment, he gets to continue to live his single baby free life in New York, he goes out every weekend, while I feel forgotten by him and he's able to distance himself from all of this, while I struggle to cope with everything that gets thrown my way.

There's about 6 1/2 weeks to go until I can hold my little one and there'll be
no more googling for me


Michelle said...

Wow. What an irresponsible 'expert'!

Love to you


Anonymous said...

Oh Tania, The internet can be such a horrible place as well as helpful! I made myself sick with worry while pregnant with Amy when I was diagnosed with Pre-ecclampsia. All the horror stories I read, and not just about the baby, about the Mother as well! I really think that your doctors are right in that your baby is fine and there is nothing to worry about. And even if in the very VERY slight case there is something wrong, it is still going to be your baby and no matter what it is going to need the same love and care you would give it if it was so called 'normal'. I really think things are going to be fine. And Glen will be here soon, he is probably going out and spending time with his mates before leaving. It is going to be a big move for him as well, strange country with only you and your daughters that he knows. And a new baby! BIg changes for both of you, but good ones :) Good luck sweets xx

Jewell said...

you poor love...please, please, please go see the wonderful ladies at ACE...they did wonders for me after Bear was born...

and please stop google as it will only mke things worse...i know as i did the same thig when DollyGirl was bad in the first three months

love to you and heaps of hugs too XXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Cyndy said...

The ladies at ACE are only there to help, not judge, Tania. You need to stop torturing yourself, and just love your baby & yourself. We're always worried when we're pregnant & never quite sure until we meet our little ones: just look at those fabulous scan pictures and believe in them. Put them back up for all of you to enjoy. It really isn't very long until she arrives: try to enjoy the rest of the journey ;0)

Hippy Witch said...

Keep away from the computer. relax, that is the best thing that you can do for yourself and your baby, wake up everyday, no matter what is happening in your life and smile and say to yourself, I like me and Im going to have a good day.
Blessings to you