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Small head/enlarged ventricles at 20 week anomaly scan - PLEASE READ

118 replies

jlgsy94 · 04/07/2019 07:26

I went along to my anomaly scan (I am 20 weeks today going by my dates, which were confirmed at 12 week dating scan). Of course as with the other scan we've had we expected today to be problem free, however that wasn't to be so. Today, we sadly discovered that our baby has 2 problems; 1st. She has clubfoot with both feet inwards, but that is nothing compared to the much more serious concern. which is that her head measured significantly smaller than it should be, and that the ventricles in her brain are enlarged.

I was upfront with the obstetrician and asked what does this mean for the viability of the pregnancy, and quality of life, to which he said it's in doubt at this point in time.

He had a detailed look throughout her heart, kidneys, bladder, stomach, spine, all of which were fine and within normal measurements.

As I am based in Guernsey, Channel Islands, the obstetrician is going to ring the Fetal Medicine Centre at Southampton Hospital tomorrow and get back to me by lunchtime. He believes the next steps are to have a detailed scan performed over there by them, along with an amniocentesis to test for chromosomal abnormalities, followed by a possible MRI scan of the baby once I am 22 weeks.

He said there is a possibility of there being a chromosomal abnormality due to the small head/ventricles and clubfoot, but that until I've had further testing it's impossible to which if any. He also said it appeared that the back of the brain/brain stem is pushed down.

For comparison I will first list measurements from our private scan on 17th June, followed by the measurements at today's anomaly scan:

Private Scan (17th June)

HC 138.4 mm

AC 119.9 mm

HC/AC 1.15

Femur 24.0 mm

FL/AC 0.20

EFW 193g (0 lb 7oz)

Today's anomaly scan (20 weeks)

HC 152.0 mm

AC 146.0 mm

FL 30.4 mm

Cerebellum Size 17.0 mm

Following notes were also included on report:

"The head circumference is small. The ventricles are visually enlarged, less on measurement due small head size. There is talipes (clubfoot). The cardiac views appear normal. The posterior fossa is abnormal with a small cerebellum which seems low. I cannot see any spinal anomaly. Julie has a history of intracranial hypertension. She had an MRI. To see in MSG with patient's notes."

When I went back to see him later this afternoon he looked through my medical notes and couldn't find anything that specifically links the two together, which is why the next steps are to go to Southampton for further testing.

It really feels like every single ounce of my joy of life have been sucked and ripped out of my soul. Everytime I feel her moving it's like yet another piece of my heart is getting crushed, partner's too.

OH would not want us to terminate and want to be able to give her a chance at life no matter what, and I do share the same viewpoint. I am just trying to think of, depending on what the problem is, what is the kind thing to do, and what would be in her best interests..

Has anyone experienced something similar, or know of a friend/loved one who has, and could share with me outcomes whether good or bad? (can be done via PM if wanted)

OP posts:
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Loaf90 · 23/10/2019 19:52

Your poor poor baby Flowers She's going to need to be one tough cookie bless her

jlgsy94 · 23/10/2019 19:59

@Loaf90

Oh definitely. Guilt consumes me every time I think about the fact she will be having surgery to close the lesion on her spine just 1-2 days after being born, and then possibly also having a shunt fitted soon after depending on how the pressure regulates itself after lesion is closed. And then to have to get her club feet corrected over time. It just seems like so much shit to have to go through as a new little baby.

I try and remind myself it could always have been something much worse, a condition undeniably incompatible with life for example, and so I am grateful that while not great, she still has a chance at a good life.

They're still aiming for c section at 39 weeks unless other concerns arise. I almost just want her here already, but know shes best left to cook for as long as possible.

OP posts:
user1498572889 · 23/10/2019 20:49

Thank you for the update OP.
I had been wondering how you were.
Hopefully 💖 will continue doing well.

TheMustressMhor · 26/10/2019 09:23

@jlgsy94

I'm contemplating phoning my local ward and asking to come up to have a listen in, even though I know baby has been active today

You should do this whenever you feel the need. That's what they're there for, after all.

Not long to go now. Stay strong.

RolytheRhino · 26/10/2019 09:37

You're very strong OP. Good luck with everything!

TheMustressMhor · 05/11/2019 16:50

@jlgsy94

Have you had your baby yet? Or have they given you a date for the CS?

jlgsy94 · 05/11/2019 16:54

Final Countdown
C section tomorrow, gotta be at hospital for 7.30am, and was told it's only me and one other lady due to have one, so should be down fairly Soonish.

Had my last steroid injection, and been given my ranitidine and metaclopromide tablets as well as pre op drink and anti bac shower gel.

Told them I get nauseated soon after the spinal is working and they said it's due to low blood pressure. They've offered to give me a continuous flow of meds through my iv to try ward off low blood pressure and also give me odansetron for the nausea, so really, really hope it helps minimise any unpleasant feeling.

Really hope baby will be ok, feeling really emotional.

OP posts:
TheMustressMhor · 05/11/2019 16:56

Aw - nearly there now.

You and your daughter will be in my prayers.

Hope it goes well.

Cannyhandleit · 06/11/2019 12:59

Good luck op if you are still waiting xxxx

jlgsy94 · 06/11/2019 13:55

Harper Grace, born at 12:35 (if I remember rightly). They had to insert my spinal twice as first time they drew blood , was not fun. Then they gave me blood pressure.meds and ondansetron. Then paracetamol, suppository ibuprofen and some fentanyl so feeling a bit high at the moment haha..

Lesion isn't that big and is covered in skin. She had to have a bit of help with breathing at first but then she cried and was nice and pink all over. Shes currently in nicu and I'll be wheeled down to see her a bit later

Small head/enlarged ventricles at 20 week anomaly scan - PLEASE READ
OP posts:
sleepyhead · 06/11/2019 14:04

She's gorgeous! Congratulations x

Haworthia · 06/11/2019 14:08

Congratulations! I’ve been following your thread for a few weeks now, and wish you all the best for the coming weeks and months. She’s lovely Flowers

DustyMaiden · 06/11/2019 14:12

She’s lovely, so pleased for you.

byefeliciabye · 06/11/2019 14:12

Massive congratulations! She is beautiful!Thanks

glitterbiscuits · 06/11/2019 14:18

Oh! Wow!! She's absolutely gorgeous! Well done OP. I hope you both are doing well soon.

NickMyLipple · 06/11/2019 14:19

Hello Harper! Flowers

peachgreen · 06/11/2019 14:22

Congratulations OP, she is gorgeous.

maternity123qwe · 06/11/2019 14:22

Just read your thread, what a journey! Huge congrats on the birth of you’re gorgeous daughter

BrunoLovesMe · 06/11/2019 14:34

Congratulations FlowersStar

shivermetimbers77 · 06/11/2019 14:54

Huge congratulations OP. What a beautiful baby! Hope you are doing ok

Cannyhandleit · 06/11/2019 14:55

Congratulations 😁😁😁x

FadedRed · 06/11/2019 15:23

Congratulations on your beautiful baby girl. Flowers

TheMustressMhor · 09/11/2019 12:45

@jlgsy94

Congratulations. Your DD looks beautiful. How is she getting on now?

jlgsy94 · 09/11/2019 13:01

She's doing amazingly well. Surgical nurse said she's "really lush". She had her spinal surgery the morning after her birth, she had a breathing tube in afterwards and had some morphine for a day, since they took it out she's been squawking.

Her wound is healing really nicely and they will be changing her dressing today. They're measuring her head circumference daily and doing head scans twice weekly to see whether her brain ventricles are growing. So far, her ventricles have stayed the same size and her head circumference hasn't grown which are all really reassuring signs.

She's weeing and pooing on her own, but they will be doing a bladder assessment on monday to assess whether she's emptying her bladder fully or if she needs a catheter. They will then also make a plan for what's happening next. She's just done so brilliantly and they couldn't be more pleased with her.

I got discharged yesterday and last night I sat and just bawled my eyes out. Partly due to all my worries over the past few weeks prior to her birth, and for so many of my worries to have gone away, it felt like a weight had been lifted off my shoulders. I also sat thinking back to when I was initially told of her spina bifida back at my 21 week FMU scan and how they had offered me a termination. Shes my perfect little girl and is a testo the fact that sometimes you just have to go with what your heart tells you. Drs are "professionals" but sometimes they can end up being like weather forecasters ie. They can throw all sorts of predictions around but actually won't have a clue how things will turn out.

Small head/enlarged ventricles at 20 week anomaly scan - PLEASE READ
Small head/enlarged ventricles at 20 week anomaly scan - PLEASE READ
OP posts:
GertiMJN · 09/11/2019 13:07

Oh congratulations on the birth of your beautiful girl!! I was on your thread previously but name changed

I can imagine you are full of extraordinary emotions. But little Harper has the most important thing possible - an awesome Mum Flowers