Bad news :( — The Bump
November 2013 Moms

Bad news :(

For those who didn't read my previous posts we have been undergoing testing for abnormal results regarding lo possibly having cystic fibrosis. We heard yesterday from her pulmonologist that her DNA results did find 2 defective genes which means she has cf. the silver lining is one of them is a more mild mutation so she could be symptom free for many years. However, she will require monitoring her entire life and this could still be a big problem later in life. I'm just so devastated an feel so much guilt for passing this gene to her. My DH and I will have to undergo genetic counseling to see who gave her what so we can let other family members know who may be at risk and determine exact risks for future children. Every time I think I am doing okay I just take one look at her perfect little face and start to cry. Even though I knew this was a possible outcome and the results could be far worse I just kept expecting to here she was just a carrier with only 1 mutation and is just fine. Thank you for all of the kind words you all have provided, it has really meant a lot.
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Re: Bad news :(

  • So sorry to hear. Ts and Ps as you move forward with this news.
    meabtahi
  • sorry to hear it :(.  ::big internet hugs::

    meabtahi
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  • Sending lots of hugs and prayers. You are wonderful parents and exactly the parents she needs. Build a good support network by getting involved in the CF community and take good care of yourself. Hang in there, Mama.

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    meabtahi
  • I'm so sorry. Sending lots of positive thoughts. I'll be thinking of you and your family.
    meabtahi
  • So sorry. Don't be hard on yourself. Remember when you look at that sweet baby's face she is looking at you thinking you are the most perfect mommy :)
    meabtahi
  • I am so sorry to hear this. Easier said than done, but try not to beat yourself up. I'll keep you and your family in my prayers. Blessings to you all.
    Ellie & Justin {Married: 7.14.12} Catherine Victoria (Kate) {BFP: 2.18.13, Born: 8.6.13 at 27 weeks and 4 days} {Moderate hyperemesis gravidarum, severe pre-eclampsia, IUGR, 87 day NICU stay with no major complications - SO BLESSED!} Andrew Richard (Andy) {BFP: 12.27.13, Born: 8.19.14} {Mild hyperemsis gravidarum controlled by medication, moderate post-partum pre-eclampsia} Furbaby Sadie Lou {Adopted: 5.12.12 at 18 months}

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    meabtahi
  • wedding06 said:

    I'm so sorry! Dh's cousin has CF and although it has been a hard road he is the most amazing person. He is a happy and healthy 20 something with a great full life. Try to stay positive, although I know I would be a mess too in your situation.

    Do you know if he is part of any cf support group? I don't even know how to get involved in this type of thing. And what is his life like? Is he sick a lot? Anything he cannot do?
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  • keight38 said:

    So sorry. Don't be hard on yourself. Remember when you look at that sweet baby's face she is looking at you thinking you are the most perfect mommy :)

    This made me cry finally in a good way. Thank you!
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    bglovesbabyk[Deleted User][Deleted User]
  • I'm so sorry to hear this.  You and DH are so strong to go through this and are great parents.  Thoughts and prayers to you both- especially now in this tough time.  @keight38 said it best, your perfect little girl thinks you are both perfect parents.  I hope you LO is symptom free for many, many years and goes on to lead a happy, healthy life.  

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    meabtahi
  • I'm so sorry. Keep your chin up and take comfort in the fact that you can love her and take care of her. I pray that she will remain symptom free for a long time. T&Ps for you and your family
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    [Deleted User]meabtahi
  • Sorry to hear this. Many thoughts and prayers for you!!

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    meabtahi
  • I'm so sorry, but can share with you that my boss has CF and is in her early thirties and has a beautiful 3 year old girl and loving husband. As someone above mentioned, she is one of the most amazing and happy people I know. Keep your head up and try not to be too hard on yourself, your baby loves and needs you more than anything.
    bglovesbabykmeabtahiMcJen715
  • I am so sorry. Remember this is not your fault. Hugs!
    meabtahi
  • I'm so very sorry.... I will be praying for the best possible results from here on out for your sweet baby!
  • Sending T&Ps. ((Hugs))
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  • I'm so sorry. I hope she is very healthy and symptom free for many, many years to come. Thoughts and prayers for you and your family.
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  • So sorry you have to go through this. Thoughts and prayers to you and your family.
  • I'm so sorry the results turned out this way. Lots I thoughts and prayers sent to you and your family as you cope and start to prepare for the possible roads ahead. I hope she is symptom free for years to come.
  • Sorry to hear those test results. T and P's to you and your LO!
  • ((Hugs)) T&Ps! Please take it easy on yourself while you process this news. You are an amazingly strong momma who will be a wonderful source of support to your LO!
  • I'm so sorry. Remember this isn't your fault. We don't chose the genes we pass on to our children. Just be the amazing mama that you are and seek out help when you need it. As others have said N13 is here for you at any capacity you need us.

                                                              

  • :( Hugs.
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  • So sorry to hear the news. It sounds like she has great parents that love her unconditionally and that's what matters most :)



  • I'm very sorry to hear that :( I will be praying down your family
  • I'm in the Denver area which has a CF benefit walk every year; my co-worker is involved in the CF community for the sake of his 2 boys. I've read some good blogs. I wish I could find the one written by the 30-some year old woman in England. Instead I find this one today: http://runsickboyrun.blogspot.com . Earlier this year my co-worker explained to me how managing CF today is better than even 10 yrs ago; I am glad for that. Hugs for you all as you learn about this condition to care for your LO in the best way.

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  • I'm so sorry, big hugs your way. My prayers go out to you.
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  • Big hugs:( I'm so sorry to hear this...I was also hoping for her to just be a carrier.
  • meabtahi said:
    For those who didn't read my previous posts we have been undergoing testing for abnormal results regarding lo possibly having cystic fibrosis. We heard yesterday from her pulmonologist that her DNA results did find 2 defective genes which means she has cf. the silver lining is one of them is a more mild mutation so she could be symptom free for many years. However, she will require monitoring her entire life and this could still be a big problem later in life. I'm just so devastated an feel so much guilt for passing this gene to her. My DH and I will have to undergo genetic counseling to see who gave her what so we can let other family members know who may be at risk and determine exact risks for future children. Every time I think I am doing okay I just take one look at her perfect little face and start to cry. Even though I knew this was a possible outcome and the results could be far worse I just kept expecting to here she was just a carrier with only 1 mutation and is just fine. Thank you for all of the kind words you all have provided, it has really meant a lot.
    I am so sorry to hear this. I was hoping for a better outcome for you and your little one. While my story is different, there are similarities with my DS, who is now 11. He had kidney failure at birth and required a transplant at a year old. He is now 11. He takes meds and will need another transplant before his twenties and who knows how many after that. I would cry for days on end, seeing him go through all that he did, and I think that is normal. 
     I don't know much about CF so I don't know what your future holds but I am sure there will be times you will feel tested, emotion, exhausted, and down right mad… and all that is normal. Just remember, you DD loves you the way you love her, unconditionally. Sending thoughts and prayers to you and your beautiful girl. She is a blessing and lucky to have you as you are to have her. 

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  • Thoughts and prayers for you and your family.
  • I'm so sorry. Ts and Ps your way.


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  • I am so sorry. I have a friend who has CF and she is 38. While she has had some challenges she is doing wonderful after participating in a clinical trial. She is married, has a wonderful son and is loving life. My husband also has a co-worker who has CF and you would never know it. She is amazing, energetic and smart and virtually no symptoms. Just wanted to share these positive stories to let you know there is so much progress being make every year and lots of hope. Sending you and your baby prayers.
  • I'm so sorry to hear this. Hugs and t&ps for your family.
    Me: 28 yo | DH: 28 yo
    Married 2012
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