Thursday, 5 March 2020

Suspected Chromosomal Anomaly: Keeping Hope


The scan from 12 weeks. How can such a perfect looking baby be so poorly?

It’s coming up to 2am, I have been reading all sorts online in the hours since I came to bed. Luke is fast asleep next to me, but sleep for me will not come.

Since the scan on Tuesday I have to admit that I felt defeated, that this pregnancy was destined to end without a baby. Although we don't have an official diagnosis, I took the prognosis to mean one of almost certainty. I felt myself take a step back from the pregnancy and my baby and somewhat disconnect.

I don't know what changed today, whether I just needed time to absorb what I had been told, whether my gut feeling had taken over the inclination to just lay down and not move, or whether the fight for my babies life won out, something made me take out the report from the scan, have another read and start collating information online.

I started out reading about Edward’s Syndrome and how bleak the diagnosis is. I have been in forums and tried to see if there is any hope, any hope at all. I know for some people they would carry on just so they could hold their baby for anytime that they may have, but for me Edwards is just to cruel... If it is that I will have to take actions to ensure my baby feels no pain.

Something in me though doesn’t believe it is Edward’s Syndrome (T18), It’s just a gut feeling, a sense that I believe is tied to the harmony test coming back low risk for the 3 main trisomies. I can't get my head around how it would come back low risk for something that my baby would have?

It has to be something else...It has to.

Following the scan on Tuesday I haven’t listened to baby on my at home Doppler. I didn’t see the point, I know the heartbeat sounds as it should, but I also know what shows on the scan. If this pregnancy was going to end in termination for medical grounds... Why listen to the beat of a heart that ultimately I would be responsible for ceasing, for stopping forever?

I cancelled my belated 16 week midwife appointment, I messaged explaining about our bad news and how I didn't think I needed the appointmnet anymore. I was really dissapointed that she didn't take 2 minutes to reply, not even a short message expressing that she was sorry to hear my news. It's a shame that she is the one person who I feel has let my care down, I have met some incredible people who have gone above and beyond for me... But I don't feel that she has been someone I can go to.

I couldn’t justify going to this appointment after the news, the way I have been has been pretty up and down. One minute I am ok, the next something pulls the rug from beneath me again and the tears don't feel like they will end. I would have just cried at this appointment, she would probably check the heartbeat and tell me that everything was ok, when I know that isn't the case. I already knew the heartbeat sounded normal and healthy. It was the findings on the scan that we’re sounding the alarm bells.

I’ve spent the rest of this week coming to terms with what I had been told. Up until tonight I have to admit that I had lost all hope, I have been reading into terminations for medical reasons because I don’t want to inflict pain on my baby. I don’t want to see them suffer. I was even reading into baby cremations and ash jewellery.

My internet searches went from your typical pregnancy symptoms to tragedy overnight.

I’ve had moments where I’ve completely lost it, like Wednesday when the pushchair I had ordered arrived. I had literally ordered it the night before the gender scan when I believed everything was ok, ironically if I had waited one more day, I wouldn't have ordered it.

I cried angry tears, sad tears and disappointed tears. Then somewhere among it all something dark and twisty made me whole heartedly laugh. 

Tomorrow morning I should have been sitting my appointment at Fetal Medicine in Birmingham, but for some reason yesterday they called to cancel that appointment. I now have to wait the entire weekend to see them and finally get my Amniocentisis that will lead me to more answers, and more difficult decisions on this already rocky road.

Part of me is annoyed and incredibly angry that I have to wait even longer for more answers, but there's another part of me that is relishing the time. For a few days atleast I can pretend everything is ok, I can live in ignorance and wish for a happy ending. 

I refused to check the baby’s heartbeat at home right up until tonight, but something changed within me this evening. Despite everything that happened this week, despite where my mind had gone I don’t feel I can give up all hope just yet.

I need to pick myself up from the position I have curled up in on the floor, look into every scenario, and have hope that it may not be Trisomy 18. It could be something else. Until the results from the Amnio come in, I have to believe that there is hope.

I’ve been reading everything I can, trying to ponder if it could be any other condition than trisomy 18 and a promised death sentance.

It feels weird saying I’m willing any other condition to fit, to almost will a diagnosis on your unborn child, but when you have been told it could be a condition that means you won’t get your baby at the end of it, a different condition opposed to no condition is the next best thing.

From what I have been told my baby is showing on ultrasound, there is a chance it could be a couple of other conditions, but I can't help leaning toward Noonan Syndrome.

From this latest ultrasound these are the notes that I have on my report:

- Despite BMI of 20 very difficult views as baby very curled up and breech.

- Placenta appears bulky.

- Posterior Fossa appears abnormal with dilated 4th ventricle.

- Lateral Ventricles 5.4mm - This is a normal measurement.

- Dolicephalic head shape (longer than expected).

- Unable to get clear views of spine (the scan images were not a good view).

- Bladder not seen (but it has been on previous scans).

- Heart views abnormal: Abnormal Axis, deviated to the left. Rate normal but brief bradycardia (where the rate drops, and this can happen in perfectly healthy babies). Only Pulmonary artery seen in 3VV. Left outflow tract seen arising from Left ventricle but unable to demonstarte in 3VV. Right heart appears enlarged.

- Unable to visualise face clearly (thanks to the view again...)

- Feet apear rocker bottomed.

- Aware high chance of chromosomal anomaly.

Not forgetting that at the gender scan, it was mentioned that it looked like the baby had potential scolosis of the lower spine (I am learning so many new medical terms in this pregnancy), although the spine wasn't visualised for further comment on this occasion.

The consultant did talk about potential Hypoplastic Heart Syndrome, so that could account for the heart, but I can't recall if she said Left or Right. What I need to understand is whether the findings on their own without Trisomy 18 give my baby a good chance. I need to have the echo scan to find out more about Nugget's heart, and I need the views to be better of baby.

I am wondering if a fetal MRI could be an option, or if an internal scan will provide a better insight to what is going on with baby. With the views on the scan being less than poor, I need to be completely certain that this is not affecting the findings.

 For now all I can do is wait, and hope. Even with all of the above listed against my baby, if it isn't Trisomy 18, then there is hope. If there is a quality of life for my baby, I will fight tooth hook and nail for life.

For now all I can do it wait and hope.



-

No comments:

Post a Comment

I love hearing your thoughts, so please feel free to leave me a comment :)