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Large mass on babies neck 33 weeks pg

13 replies

SuddenArborealStop · 01/01/2020 08:05

As title says I was given a growth scan at 33 weeks due to measuring up by two weeks, suspected diabetes but it turned out to be a large mass on the babies neck which could indicate genetic or chromosomal disorders eg downs, turners

Due to Christmas and new years I've still not had any further diagnostic tests and I'm in limbo. With no diagnosis it feels like every bad possibility is happening simultaneously.
I'm crying constantly, feel like I'm in mourning or something but babies still kicking away inside me.
I've a toddler too and I'm just not coping, how do I keep going waiting for the other shoe to drop.. I just want to drink myself into oblivion if I'm honest which is obviously not an option.

OP posts:
cabbagefordinner · 01/01/2020 08:16

You poor thing. Waiting for test results is hideous at the best of times. Have you been given a timescale for what will happen next?

Figgygal · 01/01/2020 08:18

Sorry to hear this OP hope you get some answers soon

SuddenArborealStop · 01/01/2020 08:21

I'm meant to meet the consultant again within two weeks so should have had tests in the meantime but no word yet.
My emergency feels like a boring work day for the hospital staff, understandable I suppose but the wait is killing me Sad

OP posts:

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LividLaughLove · 01/01/2020 08:24

Can you pay for private NIPT?

Would cost around £400 and give you an answer for Downs etc.

RedLemon · 01/01/2020 08:35

I’m so sorry OP. Waiting is awful and it’s even harder when there’s a toddler around so you feel you can’t just sit and process.

It’s not probably the healthiest advice but having been in a similar situation with a tentative shit diagnosis in early pregnancy I would advise suppressing the bejesus out of your emotions while toddler is awake and needs you- autopilot and denial; and then cry and talk about it, think through the various possibilities with your DH in the evening.

Nothing else to add but a handhold and my very best wishes for a good outcome Flowers

SuddenArborealStop · 01/01/2020 08:39

I've considered asking MIL for money for NIPT I think she'd give it, but if I'm due to get an amniocentesis and NIPT only lowers your risk of downs etc, doesn't actually diagnose, I wonder would it just be a waste. Also results can take two weeks so I'd remain in this limbo either way.
I have been able to ignore what's happening and get on with things but I've run out of energy for this, my crying fits last night included full on vomiting too.
I'm not trying to be dramatic my body seems to be taking over.

OP posts:
SuddenArborealStop · 01/01/2020 08:40

Toddler definitely senses something and is attached to me

OP posts:
Fouroutoffour · 01/01/2020 08:44

Oh OP, that sounds so tough! Please look after yourself! Can you call your midwife and explain how upset you are?

LeGrandBleu · 01/01/2020 08:44

I have a genetic disorder and spent thousands of hours reading about mine and other disorders and I am not sure I agree that a large mass on the neck is genetic or chromosomal as this is impossible to state without a fetal MRI. If a genetic disorder (and a chromosomal disorder usually involves a thousand genes) is severe enough to cause a large mass, it would also show other skeletal and soft tissue abnormalities.

It is quite uncommon to have large masses, and they are usually a type of cyst. Even if the doctor says the word tumour , do not panic, as tumour only means abnormal growth. My condition gives me skin tumours, but they are all benign, not malignant, not cancer as my nerve cells have a defect on the "off" switch so keep growing even when they shouldn't.

The next steps for you will likely be a high definition 4D scan and a fetal MRI to check the blood flow of this mass. You will be booked for a c-section and your baby will probably have another MRI straight away, and from there, there will be a diagnosis and a plan.

It can be something totally benign so keep this in mind in these dark days. It is most likely something benign which will be solved with a surgery to excise the mass.

Use these days, to get ready.

  • Finish to prepare the baby's space at home,
  • prepare your hospital bag and put it in the boot of the car when you go to do the next tests.
  • have emergency childcare plan ready so you don't have to worry about your toddler during the tests and in case you have to stay under hospital surveillance until the delivery
  • fill the freezer with food and meals
  • organise if you can a cleaner to be on call to take care of the house if needed

It is very likely, you won't need any of these steps but keeping busy is far better for the mind than thinking about a drink.

This is a very distressing time, but you will know more soon.

Lifeoverhaul · 01/01/2020 08:44

I have Turners Syndrome. PM me if you would like to.

SuddenArborealStop · 01/01/2020 08:49

@LeGrandBleu thank you for your post MRI is indeed the next step but I am still waiting for an appointment and the department is closed again today due to bank holiday.
I want to fast forward a couple of weeks so I can start to deal with whatever it is.

OP posts:
yourestandingonmyneck · 01/01/2020 08:50

I don't have any advice but that sounds like really good info and advice from @LeGrandBleu.

I know how horrible and frustrating it is when you are absolutely frantic and it's just another day for hospital staff, but just try to relax a bit and get yourself ready and organised as per the advice above.

Xxxx

LeGrandBleu · 01/01/2020 09:13

@SuddenArborealStop I know, waiting is horrific, and we can't help but have the worst scenarios running in our mind, this is why you need distractions during the day. Bake a cake with your DC, look up some craft and have a craft day, if the weather is nice, go at the local park, feed the ducks or whatever, visit a friend or invite someone even if you only want to stay alone.

Come here to unleash your feelings and express your fears, we will listen and support you. Many of us have been there and we will hold your hand.
Flowers

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