CF Any Other Parents On Here

1 Replies
SARAHSARAHMOM2B - September 22

I had my son Aug 17th. and still has not come home. He was born with a narrowing in his stomach, making it impossible to push out his fist stools. We waited 3 days after his birth in the Level 2 nursery, before they transported him to a Level 3 nursery in another hospital. Where in the last month they performed one surgery to disconnect his narrowed intestines and put on a G bag to have them heal. (I continued to br___t pump even though they didn’t have him on my chest more than twice to save his energy for his surgeries.) Then last Monday the big reconnect surgery happened, and the G bag was goneJ For two days life was great….we were going to have him home soon…With noooo life lasting complications. WRONG. Wednesday, I was holding him in the NICU when the nurse mention calmly to me “You know I should tell you your baby’s enzymes are very low, the nutritionist will want to see you soon”. I thought what the h__l is an enzyme? I asked the nurse how do you know his enzymes are low is that a blood test or urinate sample? The nurse proceeded to flip threw his chart…I then started babbling “I know the doctors had him have fecal cystic fibrosis test done last week does that have something to do with it?” She looked up and said “YES’. I thought I was going to pass out and drop my baby. I asked in a low voice “what are you telling me”. She proceeded to tell me the fecal cystic fibrosis test looks for enzymes normal baby’s have over 250 your baby only had 50. I said again “what are you telling me?” As I spoke my case manager walked in and shouted what you are telling this parent. The nurse then backed away and said I’ll get a doctor…the case manager took the chart read the information and demanded to know why Mom & Dad were not appointed with a consultation with the CF people. The doctor came in and said “Mam your baby was born with narrowing in the intestines that is red flag for CF…His Fecal CF test is a strong red flag also. You are a CF Carrier…I screamed yes, but my husband was tested and is NOT A CARRIER. We knew this from day one of my pregnancy. And was told by numerous doctors and nurses that it was GENETICALLY IMPOSSIBLE. So, we didn’t worry now you’re saying my son has this. He went on to tell me the blood test my husband and I took only test for 85% of the disease and my husband is probably of a carrier of the 15% they can’t test for. I sat in the rocking chair with my baby in my arms and tears pouring down my cheeks. My dream was over….That was Thursday…… Yesterday a day of overload that our dreams for him are not over but have changed…I haven’t even carried my baby threw the front door yet, and I’m finding out his life expectancy is 35.5 years, and we will never ejaculate, or be able to make children of his own. I stopped pumping 2 days ago, because he needs special formula more special that what I can give him. With all this said I have started bleeding pouring out blood, clots, all of it. Is this a period or is my body breaking down? I bleed heavy for the first 2 days after my c section, the lightly for a week and a half. Then nothing, nothing, as I br___t pumped. Now is that why because I stopped pumping or is this my regular period coming back to me? Or is the stress I’m under causing this? Thanks for you help


Macy - December 11

SARAHSARAHMOM2B, if you are still there, my heart is breaking for you, I cried when I read your story. I'm currently ttc, but my husband and I are both carriers of the CF mutation. My brother in law has the disease. He is 18 now and doing very well, he is going to university next year. He has to steam every day and take synthetic enzymes. It is hard for his mother. I've been for genetic counselling. It is possible for him to have his own, healthy children, he will just need some help. Go for counselling, read up, there are a lot of clinics and support groups world-wide dedicated to CF. Use all the support that you can get. I wish you well.



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