Worried about baby niece

[Scarlett81]

Hi guys-

Well I guess its inevitable that when you have CF, and have 8 siblings, tons of cousins and relatives-eventually one will be born with CF.

My sister had a baby 2 weeks ago, and I'm worried she might have CF. My sister was very down and very private her whole pregnancy-weird. I also got hints from my mom that there were in- utero gastro problems with the baby.

Then she was born with meconium illeus. I told my doc this and she said that baby has CF until proven otherwise. I hope they follow through and care for her. I'm so worried.

 

[Ratatosk]

When DS was born with meconium illeus and diagnosed shortly afterwards with CF, we were so busy dealing with all the emotions -- shock, denial... Just trying to cope. Close family members -- my parents and inlaws were told about the diagnosis. DS was in the NICU for 4 weeks recovering from his surgery and it was so difficult to talk about over the phone and not something I felt comfortable emailing to people. I waited until we were back home to tell our friends and coworkers. It wasn't a secret, we were just trying to stay afloat and cope with the information. There was no family history. We were totally blindsided by the diagnosis...

So maybe your sister is trying to cope and just isn't ready to talk about it. On the other hand, I do know of a couple of people who've posted on other boards, who were looking for answers -- newborns with bowel obstructions, having problems digesting food and until someone online mentioned CF, nobody bothered testing for it.

liza mom to a toddler wcf

 

[anonymous]

I am so sorry to hear this but at least they will diagnose her and treat her early and this sweet baby has a wonderful role model in YOU!

I have a niece, (I am one of five children--two of us have CF) who was also born with meconium illeus which as you stated is a clear sign of CF but when my niece was tested with a sweat test it was not in the abnormal range (but neither was mine or my brother who also has CF). And the very limited genetic test that was available at that time showed only one gene (as did mine and my brothers because we also carry a rarer gene).

So my other brother and his wife, the parents of my niece who I sincerely believe has CF have not pursued treatment even thought their daughter has a chronic cough (treated multiple times as bronchitis). Mind you CF runs on both sides of their family but they choose to ignore these facts.

I recently have been pushing very hard to have my niece tested and now I am not welcomed to call or email anymore. It is very frustrating to see a child who needs treatment not getting it because the parents can't face dealing with it. They won't even talk about the subject. I hope and pray they come to their senses soon for the health of their daughter.

I do hope things work out well for your family all around. With such a large family there will be good support and tons of love surrounding your niece.

<img src="i/expressions/heart.gif" border="0"> Janet 47 CF/ wife/ mother to 3 - no CF/ sister to brother 51 CF

 

[LouLou]

I can see why you are worried. One thing that might be causing your sister's cold, private behavior is that maybe the baby is already diagnosed with CF and she hasn't worked up the guts to tell you about the CF and that you can't be with the baby due to your cepacia. Ouch! I hope that didn't hurt too bad. I only say it b/c it is a possibility.

You could take the 'bull by the horns' and contact her / write her a letter that says something like this....

I hope the medical community proves me wrong but it is my understanding that (baby's name) has CF. I want to let you know that I understand I will not be able to get physically close with this niece like I do with my others but I do not want that to get in the way of our closeness or developing a relationship with (baby's name) from afar. After you have settled in with the diagnosis, let's set up guidelines of contact so that we are on the same page. I respect your family's health completely and really hope you'll share with me your trials and tribulations as you work things out with this new diagnosis. Call me anytime Sis!

For some reason up until this post I thoght you were adopted...

 

[Jane]

Christian, I'm so sorry for your family. It is so stressful awaiting a diagnosis. I hope all is well and that you hear soon. Your sister needs your support and love, she's probably really scared too.

Jane

 

[skh]

Christian, I am so sorry to hear this. Having a newborn and facing medical problems is always a challenge so maybe your sister is focusing on that and that may be why she hasn't been communicating with you? I hope everything works itself out for you and your family.

 

[JazzysMom]

I hope you can find answers & your sister opens up a bit more for everyone's sake! ***HUGS***

 

[Scarlett81]

OK- Just wanted to elaborate a little more and clear some things up-
Lauren-yes I was adopted! The "sister" I speak of is actually by blood my second cousin-I know, it's confusing. I've been driving the genetic counselor at my cf center nuts! So the baby in question would technically be my 2nd cousin. I have another 2nd cousin (distant) who has CF.

This is where it gets sad.<img src="i/expressions/face-icon-small-sad.gif" border="0">

All through this pregnancy I've been silently worried about the baby having cf. I heard the whispers of CF testing, as I mentioned, months ago when my sister was still pregnant. My mom-adopted mom-is very proactive about cf, and getting tested. Very educated. And she's not silent about talking to her kids about Cf. I'm sure she's been driving my sister nuts about this.

So what's sad is that I suspected something might be up months ago, and I already decided-silently-that if the baby has cf, of course I won't want to see it due to cepacia. My sister knows full well the whole cepacia "deal". When she was born, I didn't go to the hospital just in case. I didn't visit. I wanted to wait to make sure that the baby was ok, and figured of course if there's a problem they'll tell me.

So my mom has a family dinner to meet the baby-I'm invited, I go, the baby's over a week old so I figure-yea!!!! She must be fine!!!!!! There must have been no signs of Cf!!!! (you'd think they'd tell me, right?) I hold her all night, kiss her, hug her.........at the end of the night my sister says to me in passing converstion-like its no big deal-oh yeah by the way she had meconum illieus. I almost had a heart attack.

 

[anonymous]

Oh Christian I am sure this is not easy...so sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">... but you cannot change the past...or things that you have no control over. Hopefully your sister and the rest of the family will do what needs to be done to make sure this sweet young innnocent child gets proper medical attention. You certainly will be a hugh source of info and support.

If it turns out your niece does have cf, which sounds likely, then you can still have a very special relationship with her but it will be a little unconventional. I once had a very precious relationship with a little cf girl. This sweet child also had liver cancer and because of her immune system being impaired from chemo and us both having cf we could not have close contact. We became phone, mail and email buddies. She died at the age of almost 4 just about 2 years ago during liver transplant surgery. Her friendship is a precious memory that I always carry with me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know that she enjoyed our special relationship as much as I did because she would send me drawings and tell me so on the phone and through emails which she dictated to her mom. She knew our relationship was different from her other relationships but in many ways it made it more intriguing and fun because we didn't take it for granted and we found interesting ways to communicate with each other.

I know that you and your family will get through this when things settle a bit. Give it a little time and then when the time is right you and your niece can develop and enjoy your own special unique relationship.

<img src="i/expressions/heart.gif" border="0"> Janet 47 CF

 

[Scarlett81]

thanks janet,

I know 'this too shall pass'-or at least there will be some resolving to it. some answer. I just have to expect this to be a very difficult time for a while. I just feel like I should stay out of the way-and not interfere. They would ask for advice if they wanted it I guess-they know I have it afterall and they know I have experience in this field. So I'm guessing they want their privacy.
I don't know. I don't see any happy solution to this. My sister is a great person-but we're not close. SHe has a wonderful husband-and I'm happy for her. But I don't think she wants to be close to me. I've noticed this especially since the pregnancy. Maybe this is why?

 

[Allie]

OH honey, I have no answersw, just a hug *hug*