Expecting Parents of Child with CF

[ejwiegert]

We have just found out today that the baby girl we are expecting will have some form of CF based on genetic testing done recently.

Does anyone have any suggestions about preparing for a child with CF? Emotionally, around the house, siblings, medically, etc.? Are there additional resources online that I am missing? I have checked out cff.org and this site rather extensively.

Thank you in advance for your input!

 

[Ratatosk]

Basically you need to be proactive in caring for your child -- chest physiotherapy to keep the lungs healthy, possibly nebulizer treatments 2-4 times a day, depending upon the clinic -- possibly some medications (antibiotics, vitamins...)

Is there an accreditted CF Center nearby? Your child will most likely require digestive enzymes with each feeding -- which involves breaking open a couple capsules and sprinkling the contents (beads) onto a baby spoonful of applesauce, baby food bananas....

Does your hospital have a high level NICU in the event your child has a bowel obstruction? We didn't know our son had cf until about 12 hours after he was born and he started vomiting green stuff -- he was lifeflighted to children's hospital 250 miles away for surgery and spend 4 weeks in the NICU recovering.

Enjoy your child. Let her be a kid! Medications, chest physiotherapy (CPT) all becomes routine. May seem overwhelming at first, but eventually it'll become habit.

 

[anonymous]

Hi, Emily and Dave. First of all, I'm so sorry that the CF tests came back positive. My husband and I were in the same situation just a little over a year ago. We found out through CVS that our daughter would be born with CF, and it was a terrifying time for both of us.

I posted a similar question on this board when we first found out, and was amazed at the information and support that people gave. One person suggested I contact my local CFF chapter. I did, and they put me in touch with several local families who were raising children with CF. I know people deal with this kind of news differently, but for me, talking to other mothers and fathers who were living lives, dealing with this disease, was very comforting. For all of the reading that we had done, there were still so many unknowns, and talking to others answered a lot of our questions.

One of the first things I read when I first came to this forum was from a 16 year old girl with CF who had posted pictures of herself at a cousin's wedding, dancing and clearly enjoying herself. I can't tell you the comfort that that brought me. When you first get news like this, it is absolutely devestating, and you feel as though this dread and fear will be a permanent fixture in your lives. Seeing that picture was very calming ... people with CF dance, go to weddings, smile for cameras, etc.

We are still very new to the CF world, and there are definitely times when I look at my baby and feel so scared of what she face years down the road. But most of the time, I look at my baby and think how sweet she is, how happy and giggly she is, and how much joy she has brought our family.

Ellie is eight months old now, and other than a few colds, she has been a very healthy and happy little baby. She takes enzymes before each meal, prevacid in the morning to aid her digestion of food, and a vitamin supplement at night. We do chest physical therapy on her twice a day partly to keep her lungs clear, and partly just to engrain it into our daily routine. We go to see her CF doctor every month or so to get a weight check and a throat culture (every few visits), and of course her regular pediactrician visits.

I would definitely contact your local CFF chapter, and post any questions you have. Like I mentioned earlier, we were in the same boat just a year ago, so feel free to email me (mailho@comcast.net) if you have questions or want to know more what to expect.

-- Jenica
Mom to Abby (2, w/o CF) and Ellie (8 months, w/CF)

 

[anonymous]

One thing to take into consideration is that there is a lot of information on CF out there and some of it was very outdated. A well-meaning friend gave me a book on CF shortly after DS was diagnosed -- it was a reprint of a book from the mid 90s -- life expectancy was a lot lower, several medications commonly used by CFers weren't even developed at that time.

Our child is a normal little boy, who needs some extra medications and treatments to keep him healthy. When he was a newborn, we had the rule that anyone who wanted to hold him, had to wash their hands. Just a common sense issue with any infant, as their immune systems aren't quite developed. Another thing to consider is because of cross contamination issues -- cfers really shouldn't play together, be in close contact with each other -- think someone once said should maintain at least 3' distance. CFers can carry different bugs that only cfers can get -- pseudomonas, hib, cepacia, staph... Something to keep in mind when going to CF clinic -- is there a community waiting room? When you go to cf clinic, they'll probably do a throat culture each time to see if your child is growing anything.

<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ejwiegert]

Thank you ALL greatly for your insights. Specific questions we have been trying to get answered are:

1. What is the expectation of a parent needing to stay home with a CF infant?

2. What can we do to prepare a toddler for a baby sibling with special needs?

We just want to be as prepared as we can for making sure the baby has the best care and the best opportunties to thrive!

 

[Mathews]

I have a friend with twin daughters with CF. They were diagnosed as babies. If you PM with your contact info. I'll forward to them.

 

[sdelorenzo]

Hi! First of all, congratulations on the precious baby girl you are expecting!
I am sorry to hear that she has been diagnosed with cf. But your daughter will be sooo much more than her diagnosis of cf. She will be a lot like you daughter you already have, she will just require more medications to keep her healthy. A parent at home will most likely need to do chest physical therapy for 20-30 minutes in the morning and 20-30 minutes in the afternoon. It does take a little bit of time keeping up with prescriptions and taking them to the occassional doctor visit. My kids only go to the cf doctor once every three months. As far as preparing your daughter, all she needs to be prepared for is an adorable sister that will greatly enrich her life.

Please send me an e-mail to sdelorenzo@sbcglobal.net, so I can send you a slide show of my kids. I think you will be able to see through their pictures what normal lives kids with cf live. I know it must be a difficult day for you.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Hi there,

I found out my daughter had CF when I was 5 months pregnant with her. I already had a healthy 4 year old boy at the time, whom we had sweat-tested to make sure he did not have CF as well(he does not have CF) I decided to stay at home til my youngest daughter(with CF) went to school. Some people work and some people stay at home. (I had been a nurse for 9 years prior to having my daughter and I felt I was the best one to take care of her, plus I really wanted to experience the stay at home mom thing).

Preparing siblings would be pretty much the same as preparing them for any other brother or sister. Then I guess as things come up you explain it as simply as possible. For example, baby needs enzymes to digest their food. Baby needs vitamins to keep them healthy. Baby needs chest PT to keep her/his lungs healthy.

My son (no CF) is now 7 and can explain to adults about CF, his sister needs enzymes to digest her food, her Vest and "puffpuff"(nebulizer) to keep her lungs clear. She (we all do) needs to wash her hands after going to bathroom before eating so she doesn't get sick. My son and friends do not think it weird all my daughter's treamtents. In fact yesterday we had a playdate with the neighbor's kids they all came running into the room, cause they were going to share a toostieroll candy and wanted to know if Maggie needed enzymes first.

Anyhow, you'll find your new"normal".

any questions feel free to e-amil me at rebjane30@yahoo.com

Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a>

 

[anonymous]

I just want to add that I think the CF routines (meds, etc.) are a lot less overwhelming for the child patient (at least so far - my boy is 3) than for the parents so I'd focus on your needs for being prepared. It can be an emotional rollercoaster sometimes and learning to be emotionally resilient helps alot.

 

[anonymous]

Our son was diagnosed shortly after he was born. I'd arranged for daycare prior to his birth and we were concerned that we would either need to find a nanny, one of us would have to stay at home or we'd need to make other arrangements. Eventually DS is going to have to go to school and get exposed to germs, so we asked our CF doctor about the daycare issue -- he indicated that smaller daycare, where infants are separated from the other kids, would be fine. The caregivers all get flu shots, DS also got a flu shot and synagis shots (RSV prevention) during cold and flu season.

DS started daycare when he was 3 months old. There were 4 other babies in his room. The caregivers learned how to give him his enzymes with a bottle and let us know if there were any issues with his poop -- malabsorption issues. We do CPT at home -- a woman I know goes to her child's day care over the noon hour, but we didn't want to disrupt things -- 3 times a day -- 6 a.m., 5:30 p.m. and 9:30 p.m.

Orginally we started going to cf clinic every 3-4 months. Now we go twice a year. Every night I organize his medications for the next day. Put them in a baggy in the fridge and keep track of dispensing them on a white board in the kitchen.

Liza aka ratatosk mom to a toddler wcf

 

[ejwiegert]

THANK YOU THANK YOU THANK YOU!

Again, I can't thank you all enough. Lots of great information. I've taken the email addresses given and will try to contact you all in the near future. I'm just swamped with end of the school year stuff.

Dave and I are really struggling with trying to figure out the stay at home vs. day care vs. nanny. I teach so I know I bring home so much stuff and Lucy (big sister) would be in day care also and she brings home EVERYTHING now. We were told by the geneticist that I have the no good, horrible, very bad carrier strain of CF and Dave has the "if you have to have CF, this is the version you would want to have" carrier strain. We were also told that this means that we have no real idea what things will be like since she could have my version, Dave's version or some version in the middle.

I'm thinking I just need to take a leave of absence for the first semester of school next year and then we can decide from there what direction to take. That way, I can take time to really learn how to take care of our child and be able to show a nanny or daycare from direct experience. I'm not sure if we can really afford it, but I'd be willing to do what we have to to make it work.

 

[ejwiegert]

duplicate...sorry

 

[anonymous]

Emily,

Just also wanted to add that for feeding the baby you can breastfeed and this will help your child build up their immunities immensely. I know infant feeding can be a touchy subject but this is another thing you can provide your child. I breastfed both my kids(one with CF and one without). If you want more info about breastfeeding a baby with CF let me know.

Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)

 

[ejwiegert]

Rebecca,

That would be great. I breastfed our first daughter as long as I could before I returned to work, but wished I could have done it longer. Please point me in the right direction for more info!

Emily

 

[anonymous]

Emily -
Genetic counselors actually know very little about cf. Don't let anything she told you scare you. Both of my children have double delta 508 (what you have) and they are very healthy children. Cf varies so much from person to person, you can't predict based on the genes what issues the person will have. Yes, in my opinion breastfeeing is very important (although doctors are not always on board). The milk is easily to digest and there are plenty of other things (antibodies) in it to help your baby. Also, it is important for you to work with a perinatal doctor so you can make sure you baby is not showing sign of intestinal blockage. They say 10% of cf babies are born with this blockage. It is very helpful to know ahead of time. Enjoy your summer! I was a teacher too before I had children.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Hi Emily,

I don't want to overwhelm you with info but I guess the best way to start is to think about how it went when you breastfed your first child. Did she gain weight easily? Was she chubby or slim when you breastfed? Did you feel you had a good, healthy milk supply? The reason I ask this is because most all children with CF have trouble with absorbing their food. That's why we give them pancreatic enzymes before most all food. Each nursing relationship is different but if you look at how things went with your first child you can get an idea of what type of milk supply you will have with your second child.

It's especially important for the baby to get the colostrum, after birth. My daughter was born with a meconium ilues(a bowel obstruction a complication that can occur for CF babies). She required surgery for the obstruction(told you this might be too much info) Anyhow, I knew this might occur when she was born so I had bought a breastpump(a hospital grade one, Medela) I pumped for 2 weeks before my daughter could nurse herself. And I made sure she got the colostrum in a bottle.


Taking care of yourself as well as your child will ensure a good milk suppply. Eat and drink well . Ask for help, family etc. Eat oatmeal(increases milk supply.)


And also know that if you do need to supplement that it is ok. My daughter was able to breastfeed without any supplemention. I used to joke I had enough milk for 2 babies. Not everyone does. Just do the best you can


Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)

 

[anonymous]

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[anonymous]

** MESSAGE HAS BEEN DELETED **

 

[Ratatosk]

Our attitude was that eventually our son was going to have to go to school and interact with other children. We were comfortable with how the daycare center was run. There were only 4-6 babies in the infant room and they were kept separate from the "germy" toddlers and the older school children. Our son did well his first year. He did get an ear infection at 4 months of age, another shortly after he turned a year old, had a couple of colds and a sinus infection.

When our son was first diagnosed (at birth) a couple of parents of older CFers told me that the first year was HORRIBLE for them. Their children were always sick, in and out of the hospital with pneumonia and other infections. So I was terrified that he was always going to be sick and be hospitalized. What I failed to consider at the time was that these children, weren't diagnosed right away -- it was only thru the failure to thrive and frequent infections that the determination was made that they had CF.

I opted to bottlefeed our child. We were pressured to try pregistamil -- a predigested formula that I eventually tasted after our son threw a screaming fit every time we came at him with a bottle. It tastes like vomit and the way road kill smells. Our doctor said "Feed him what he'll eat" and we switched to regular formula.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ejwiegert</b></i>

We have just found out today that the baby girl we are expecting will have some form of CF based on genetic testing done recently.



Does anyone have any suggestions about preparing for a child with CF? Emotionally, around the house, siblings, medically, etc.? Are there additional resources online that I am missing? I have checked out cff.org and this site rather extensively.



Thank you in advance for your input!</end quote></div>

We found out our daughter had CF when she was 6 weeks old. picked up on screening. As you can imagine came as a hell of a shock. We also have another daughter without CF. We have never hidden any of our daughters treatments, etc from our eldest daughter and she has always been involved. As the other people have posted at first it is very overwhelming (still is!), but you learn to live with it. Take each day at a time and don't be too hard on yourselves. Any questions, I'll be more than happy to try and answer.

Take care.

Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">