New Baby and speculation on CF

[mom25kids]

Good Morning,

I have a few questions. My grandson has CF and he is 2 1/2. My daughter just had baby #2 and we have already started to worry and speculate about whether he will have CF also? What should we look for at this stage? He is 4 days old. I know weight, but we have no way to weigh right now till he goes to dr on Saturday. He eats great....she is breastfeeding. It's hard to tell from stool....it looks like what it should from a breastfeeding baby. We have licked him...LOL, but no salty taste. Would you necessarily taste the saltiness this soon? Any ideas would be appreciated.

 

[Ratatosk]

Loss in weight, loose stools. How does this baby compare to your grandson at this age? Knowing you grandson's mutations and assuming same father, I would think the hospital would've ordered genetic blood testing. Does your area have newborn screening?

DS had digestive issues and wasn't salty to begin with. People wcf are born with normal lungs and over time they'll become affected, so lung issues shouldn't show up yet...

 

[mom25kids]

Loss in weight, loose stools. How does this baby compare to your grandson at this age? Knowing you grandson's mutations and assuming same father, I would think the hospital would've ordered genetic blood testing. Does your area have newborn screening?

DS had digestive issues and wasn't salty to begin with. People wcf are born with normal lungs and over time they'll become affected, so lung issues shouldn't show up yet...

We can't remember with the first child because we were not looking for it....found out when he was a month old after 2nd newborn screening. Yes, we have newborn screening, but of course we are wanting to know sooner....just wondering about newborn signs....of course the weight gain, but we won't be able to weigh him again until tomorrow. Yes, same father. Do most have all CF children if they are carriers? His stools are normal for breast fed baby and don't smell, so I guess we won't know anything till later. Thanks for help.

 

[Ratatosk]

There is a 1 in 4 or 25% chance that parents who are carriers will have cf; however, I have friends who have two or three children wcf and others who only have one. I'm surprised based on the first child's history the OB/GYN didn't order bloodwork/genetic testing immediately. Especially if they mutation results in pancreatic insufficiency and needing enzymes sometimes CF can present in meconium ileus at birth. My child required surgery the next day to repair the bowel obstruction caused by MI.

 

[Ratatosk]

The other issue as far as stools is, that it's my understanding that breast milk is much easier to digest. Sometimes when one switches to formula or regular food, the pancreatic insufficiency and the need for enzymes is revealed.

 

[grammakaky]

I do remember right off if pancreatic insufficient; stools were almost a neon green color. Very noticeable if not on enzymes!

 

[LittleLab4CF]

That lick is a reliable source of early diagnosis, as early diagnosis goes. Mom needs to be optimally hydrated including electrolytes to insure it's in her milk. One thing for certain, mother's milk is especially helpful for baby if it has CF. I appreciate that formula bulks faster but everything from antibodies to probiotics are like gold, building baby's ability to maximize digestion. BTW; there are growth charts for breast fed and formula fed babies. They are different enough that a healthy breast fed baby is underweight using a formula feeding chart. Nothing is wrong with either one.

Fortunately the type of sweat gland one would kiss or lick, are in areas we don't grow hair, like arm pits. "Beware the infant who's brow kissed, tastes of salt, for surely he will die". Words to that effect accurately identified CF long before we had a name for it. Excepting that we can expect far better outcomes for CF, this dark age lymric was fairly accurate. I suggest binding a closed hand on the baby for 30 minutes, allowing his palm and fingers to sweat without it touching anything, unwrap it and give his palm a lick. CFers hands and feet sweat abnormally large amounts. The sweat on my hands literally crusts over my steering wheel. Every few days I take lots of warm water to dissolve the concentrated sweat. Sweat glands are mature and functioning at birth. In theory, salty perspiration will be happening at birth. Then again, he's been in water for nine months.

Personally I'd suggest that everyone take a step back and celebrate the new member in the family. CF is about to be genetically corrected for the entire CF population. This could be in months or a couple years. It is a wondrous time we live in.

Here's hoping everything is normal,

LL

 

[mom25kids]

Hello everyone,

Thanks for the advice and words of wisdom. I have five children and my daughter has two and we all live under one roof....so nine in all our family. We've been real busy. Well, we took him back to dr at 5 days old and he had gone from 6lbs 12 oz to 7lbs.......he weighed 7 lbs 2 oz at birth. We weighed him last night at 7 days old and he was 7 lbs 4 oz. I don't know if that is a good sign or not...he just seems so skinny to me. Sadly, my daughter quit breast feeding. She started to run a temp, her breasts were red and bleeding into the milk...she was just miserable. Her dr put her on antibiotics, so she has been getting better. I licked his palm of hand and I don't taste salt. I know what you mean by the salt custiness as it resides on my grandson's forehead.

They didn't order any testing and the pulmonologist just said we will wait for newborn screening to come back....I was surprised too. We are most definitely enjoying him....sweet, tiny baby boy. I think I worry more than my daughter does. I just hate to see her so young....19 dealing with two children

 

[Aboveallislove]

Dear Grandma,

It just dawned on me who you were. I had often wondered how your daughter and (first) grandson were doing. Blessings to you and your family.
Love

 

[mom25kids]

Aboveallislove,

Yes, it's been awhile since I've posted.....life has just been so fast. Jaiden...the first grandson....has done really well. He went two years with no issues whatsoever and then this past summer, he had to be hospitalized for staff infection in lungs. Thanks for your kind words....blessing to you as well.