Spherocytosis and pregnancy

I have spherocytosis, and have had my spleen and glabladder removed. Whenever I was born my parents went through alot until they figured out what I had. Now that I am married, me and my husband are thinking about having a baby. I have read many discussions about having a baby born with this disorder and the trouble. Should this stop me from trying to concieve? What should I worry about? and how can I prepare myself?

Report post

6 replies. Join the discussion

I suggest that you meet with a local genetic counselor before pregnancy. If you need a referral to genetic counseling centers in your area, let me know what large cities are close to you.

Report post

Hi! I am new to this site. I was just diagnosed with a mild form of HS at the age of 25. The only way I even found out i had HS is because my 2 year old daughter was very ill and, after numerous rounds of testing, we figured out she has a moderate to severe case of HS (passed down from myself). In my personal opinion, this should not stop you from trying to concieve. Especially since you already know you have HS... if your child should happen to have HS (which is only a 50% chance, I have 2 healthy children and 1 with HS) your doctors will be one step ahead of the game. I would suggest consulting with a pediatric hemotologist when you do find out your expecting, so you can get more answers, just incase. I don't know if this helps, but my daughter has yet to need a blood transfusion... we ride it out the best we can. While she was very jaundice at birth, and for some weeks thereafter, we have yet to go down that road. I have been told by her doctors that she will have no restrictions as far as school and sports. They said the main things to look out for are parvovirus B19 (Fifths disease) and Mono, however any virus can cause problems. I have had to have my gall bladder out, but not my spleen, and her doctors figure her gall bladder will need to be removed as well, but are pushing back spleen removal until absolutely necessary.
I see it like this... we have lived with this disease (in my case wthout even knowing it) and are fine... so it should in no way affect your starting a family. You and your baby will be fine :) ( I hope I could help :) )

Report post

HI! well, I have had a child and I have spherocytosis. Having a child wasnt very different from all the 20 some odd mothers I knew that were pregnant. Yes, I was generally tired, but Ive lived with that issue since I was young so it wasnt horrific for me. I think there are a few things you should know before you decide what you want to do.

1. There is a 50/50 chance that your baby will have it (so you may wanna hope your significant other has strong genes)
2. You will be concidered a high risk pregnancy
3. I have a MILD case of it. My spleen is not always HUGE...though for the most part its a little big. So I didnt have to go through a bunch of pain when my baby got to 9 months and was squishing my insides but if your case is more severe you may want to think really strongly about it seeing as when that baby kicks you at 9 months, if they kick your spleen IT HUUUUUURTS!
4. Your baby may be born with severe symptoms and need a blood transfusion.....or a bunch more through the rest of his/her life.
5. This is a decision not to be taken lightly. If your child is born with severe symptoms it can put more stress on you and your marriage. This may make or break a family. Make sure you both are up for a fight against money problems, career problems, butt head doctors exct. If one feels like they werent in it all the way they might resent the other and make conflicts when it should be a time to work together.

I hope yall make the right decision for THE TWO OF YOU. What may be right for your neighbor may not be right for you.


Report post

Thank you so much for your input! I was diagnosed as a baby with a severe HS. I recieved it from my dad, which did not know until me that he had it. It is just hard to know that I could be bringing a baby into the world knowing that it could possibly go through alot of health trouble! My husband and I have talked about the problems we could face and are both up for the job! I have also made a pre-conception visit with an OBGYN just to be a step ahead, and also to know that we will be prepared for whatever God throws at us!
CCollins, I had my galbladder out whenever I was 7 and my spleen whenever I was 12. I pretty much lived in the hospital until I had my spleen removed. Knock on wood, I haven't had any trouble since! So whenever it is time for your daughter to go through that, it could be for the best!
Thank you so much for your comments! This has really helped!

Report post

It's good to actually beable to talk to someone else who has delt with this, and is still dealing! We just found out that this was def what my daughter ( and I ) had a few weeks ago (although the hematologist thought for months it was prob spherocytosis). We had to wait forever for them to be able to schedule the Osmotic Fragility test. (We live in a really small town, and the closest hospital that does it is 2 hours away.) It gives me hope for my daughter to hear that you didn't have your spleen taken out until you were 12! We've been sitting around hoping she can wait til after shes 5 (shes only 2 now) since it reduces the risks of complications. I wish you the best with getting pregnant :) I don't know what I would do with out my babies <3 I'm sure you will be great parents and your baby will be in the best of care :)

Report post

Get your body prepared for holding, having and caring for a baby. Eat only what will feed your body best, I've talked about a halleluah diet before (raw food vegan - 15% cooked food). Nutritional needs may be different for a prego mom but you've gotta train like it is a marathon! Re babe, if you must have tour own child, it is a 50/50 chance of passing on the disease and like the posts before me mention you have to prepare for the maybes.

I wish you peace and health.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Join our Gaucher Disease Support Community today!

Things you can do

Support Genetic Alliance

Help Genetic Alliance reach its goals and support people like yourself by making a donation today.

Donate to  Genetic Alliance

Join our PNET patient community today!

Join the Cushing's Disease Community on Inspire Today!

Discussion topics

Community leaders