Newley diagnosed at 26 years old and have just found out I'm pregnant.

[Pdotmummy]

Hi everyone,

This is my first time posting and am looking for any advice relating to pregnancy with a ALS diagnosis.

I started getting my symptoms 2 years ago when I was 24. It started in my left hand and eventually the constant twitching started in my arm. I have had numerous MRI's, blood work, lumbur puncture and Emg's. My results of the first EMG showed degeneration in my left arm but everywhere else was normal.

On my latest EMG they picked up that it has now Spread to my tounge. Due to this they diagnosed me with ALS which was last month. They have said I've got a slow form as its only just started spreading and my first symptoms were nearly 2 years ago.

I have two beautiful children who are 2 and 6 and to be honest I'm absolutely heart broken. The thought of leaving my children motherless is causing me a lot of guilt and stress. I'm in denial at the moment I just can't believe it as yet.

On top of that I have just found out that I'm pregnant. It was a massive shock but I was prepared to do it as I feel everything happens for a reason and this must be a blessing. Well yesterday I met with my neurologist to discuss risks of going ahead with the pregnancy and they have all said it could be life threatening and even myself and the baby may not make it. The highest risk is that my breathing could become affected due to the pressure and weight of the baby.

I understand they have to give worst case scenario but it's all "what if", "this COULD happen" and I completely understand ALS is the unknown as everyone's progression is different.

I'm just so confused at the moment. Obviously I don't want to risk my life as I need to be here for the children I already have , but at the same time they said my breathing may not be effected as I have a slow form. My breathing isn't affected yet, just my arms and twitching in my tounge but who knows that might be a different story in 7 months if I continue with this.

This diagnosis has shown me that life is precious and to live it to the fullest while I can, so for me to then go and abort it is just an awful and hard decision to make. Has any one on here had a baby after been diagnosed? And help or advice would be much appreciated. Hopefully I'm here for a long time ��

 

[KimT]

I'm so sorry you find yourself here.

First, I suggest you get a second opinion. Do you have clinical weakness?

 

[lgelb]

Definitely get a second opinion, but the short answer is, there are some PALS who have given birth.

If you Google ALS and pregnancy, you will find some stories told in both clinical and newspaper terms. Of course, they cannot predict what will happen to you, whether you choose to have the baby or not.

If you decide to continue the pregnancy, I would be certain to find an obstetrician who specializes in high-risk births, and who has the personality that fits you, to help you manage the "competing risks" for you and the baby during pregnancy and delivery.

The reality is, it is ALS (assuming that you have it) that is the primary risk and there is no way to know how much the pregnancy itself would decrease your life expectancy. That said, since your tongue now has dead or dying nerves, it is certainly possible your breathing could be affected during pregnancy, which would require use of BiPAP.

As you will see in the article I linked, and will hear from others here, being honest with the children and letting them help insofar as their age permits are also considerations with either two or three kids.

I would talk with your partner or spouse about questions like:

If the new baby shortened your life or gave you less quality time with your kids, would you and/or s/he feel any differently about her/him once you were gone?

Is s/he prepared to parent your current kids + one who might be a newborn, whether you are around or not, as you could be in any stage of disability later on?

If you terminate your pregnancy now, how will that affect you as a couple?

In major decisions, it is always advisable for each of you separately to write down the things that are most important to you, then pretend to have made the decision based on the list, and see how you feel at root. There is no "right choice," but only the one that is most right for you and your family.

Best,
Laurie