Just found out my twins are CF...

[Libby]

I have twin boy/girl newborns, who have been diagnosed with CF, I am only new to this and dont know much so any advice would be good...
Also, can i still work? I got told that it is a hard job caring for 2 newborns with CF and I will be a single mum looking after them.
By the way they said one of the twins (the boy) will most likely be but on oxygen, is it normal? have you had this?

Thank you,

 

[Printer]

Libby:

I have so many questions. I don't want to give you any false hope but it is very important who diagnoses and treats Cystic Fibrosis. It should not be treated or diagnosed by your local Doctors. If you haven't already, you need to contact the nearest Approved Cystic Fibrosis Clinic and have your children treated by a CF Specialist. If you tell us the State and the name of the nearest large city, we will find that center for you.

It would be a difficult job caring for healthy newborn twins, yes this will be more difficult. It is not unusual that one child could require oxygen.

I am glad that you came here and we will be very happy to give you help and support.

Bill

 

[Ratatosk]

DS was diagnosed when he was a newborn due to an intestinal blockage. I went back to work when he was 3 months old. We found childcare we were comfortable with in terms of disinfecting, enforcing the sick policy... DS did quite well. We did chest physiotherapy at home before work, after work and before bed. He had more digestive issues, so we were feeding him every 3-4 hour, so that was a bit stressful. We pretty much just got into a routine and took thing one day at a time. Today he's an active 4th grader, still goes to daycare after school, is in gymnastics, swimming lessons....

 

[Rebjane]

Welcome. Are you in the United States? Do you have family to help? Any other children? The Cystic Fibrosis Foundation at www.cff.org has information about Cystic fibrosis and care of newborns. Taking care of twins as a single mom would be alot of work so CF newborn twins is going to be even more work. Utilize every resource available to you. Ask lots of questions; there is no silly question. Not all doctors are created equal in CF care. A CF pediatrician is of utmost importance in the care of your newborns. Take it one day at a time. We are here for you!

 

[Libby]

I have seen a CF pediatrician, I dont have any family since in my family it is wrong to be young and be single with children. I dont have any other children and dont plan on for a while. I do have a really close friend who said he will help me out a lot which I am so grateful for, he has been here since I found out so he knows as much as I do.
I dont want to contact my family since they will say its all my fault,

 

[Printer]

I understand that the CF World is overwhelming but I will say it again, Your children need to be seen in an Approved CF Clinic/Hospital by a CF Specialist. I know that the Moms, out here, will join in this message.

Good luck,
Bill

 

[Gammaw]

Libby. Welcome. I see in your profile that you live in the UK. Perhaps some other members can guide you to more resources. It's unfortunate that your family isn't supportive. As for your suggestion they will just say it's all your fault......hogwash to them!. You obviously are a carrier of a CF gene. Which means one of your parents is a carrier too - that's where you got your CF mutation. And your babies Dad is a carrier too and so is at least one of his parents. Take a look at all your family members .....There are likely carriers in there somewhere! And at your babies father's family too. They say that carriers are asymptomatic. I've never believed that either. I see sinus issues, gastrointestinal issues, and lung issues all over our family trees. I would take bets on which ones are carriers! So they are all responsible and all NOT responsible just like you. NONE of us get to pick our genes and you and your babies are innocents.
As for their care, the first thing I did after getting the routine in place and learning the ropes of caring for the most marvelous little guy in my life - who happens to have CF - was run ads for in home nannies , sitters , whoever I could find at local colleges especially the education and nursing departments. They were students, not as expensive, but strictly followed the guidelines for care. I would cobble together two sitters a day sometimes 3 or 4 different ones in a week to fit their class schedule. Their youth and course of study helped ensure they were energetic, patient, and loving caretakers. I hope I've helped with some ideas. Come talk to us anytime. We've all been there!

 

[Rebjane]

Libby,

Your twins having CF is not your fault. It is genetics. It would be like blaming you for giving your child blue eyes vs. brown. Does the hospital your babies are at have a social worker to help you get things you need; for example CF vitamins and pancreatic enzymes. A respiratory therapist taught me and my husband in hospital how to do gentle Chest PT on our newborn. Make sure you take care of yourself so you can take care of those babies. I bet they are beautiful and remember they may have CF but they are still your beautiful babies.

My daughter is now 11 years old with CF. She had a rough start but I dropped her off at school today and I was struck by what a smart, beautiful, fun preteen she has become.

When my daughter was born I grieved for the life I thought she would miss out on. Yes she is sick alot and it is alot of work. But, us Moms of CF'ers have a secret; our kids teach us the true meaning of life. Embrace every moment. Little things mean so much. My daughter does not miss a beat. She pushes herself to do what all the other kids do plus some. She is in show choir, public school, in the highest levels classes; math club did cross country running. It's exhausting but She inspires me to be a better person. Keep your head up.

 

[threebabies]

Hi I feel for you. I have twin boys who have cf they are now 4 1/2 and a 6 year old daughter with cf. I am going to be honest it is a tough road. My boys had a lot of issues when they were first diagnosed. However, with all the challenges our family faces it becomes the "norm." My children are wonderful and I am so lucky to have them. They are intelligent, funny and the bravest kids I know. They even drive me "crazy" like any other kid would to their parent lol.

Listen to Printer and find a good cf clinic to follow your babies. Also try to get help and support. I am fortunate to have a good support system. It took some fighting but I got help. Also, I am currently a stay at home mom. I do plan to go back to work someday. As for the oxygen everyone's presentation of the disease is unique and the progression of the disease varies from person to person. Good luck and stay strong. You can private message if you need someone to talk to.