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Finding Out (Your Child has CF)
- Thread starter anonymous
- Start date
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
The day my son was dx. w/cf is a day i will never forget. My OB GYN called me when Tucker was about 4 days old and told me that I needed to bring him in at an earlier time for his one week check up because they said they needed to do another heel prick because they didn't get enough blood the first time around. I questioned immediately if something was wrong and she said no, but my gut was telling me there was. So, the day came for his one week check up. I had to take him to the appt. myself since my husband is a coach and had a game to coach that evening. We went into the room, she checked everything out and asked the normal check up questions, then at the end of the visit, she non-chalantly said, and "Well, all of his tests for the newborn screening came back negative except he did test positive for CF". These will be words i will never forget as long as i live. My heart sunk and I looked at Tucker and thought, "this can't be happening . . . he is too perfect to have something wrong with him". After the doc told me, i asked what cf was. All she could tell me was that "he will fail to thrive". I was soooooooooooo upset that she told me about him testing positive for CF when i was there ALL by myself!! Hello? She could have called me the day of the appointment and said "you may want to have someone come with you because we have some concerns" or something to that effect. I mean, here I was, bawling my eyes out, shaking like a leaf, having a breakdown, and then I had to try to figure out how i was going to make it back home which was a 45 min. drive? Anyways, to make a long story short, I called my husband and was able to catch him before he left the house to go coach his game. He came to the clinic and when he walked in he had tears streaming down his face. We just sat and held each other for what seemed like eternity. A moment I will never forget! Since Tucker's dx. 4 years ago, i have written this specific clinic and strongly encouraged them to change their protocol as to how they go about breaking news like this to someone. But, unfortunately, I don't think they have made any changes. There is no easy way to break news like this to new parents, but I feel they could have done it a bit more respectfully and tactfully.
Jodi, Mom to Tucker 4 w/cf</end quote></div>
You poor things! I agree, there is no easy way to tell new parents, but respect, tact and sensitivity play an enormous part. There is no way I would want any parents to go through what me and my husband went through when we were told about our daughter. It was a nightmare! When we met with the Consultant he asked what we thought about the way we were told, and I said that they could have gone about it a better way. But as you say, I don't think they've made any changes either.
Charlotte<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
The day my son was dx. w/cf is a day i will never forget. My OB GYN called me when Tucker was about 4 days old and told me that I needed to bring him in at an earlier time for his one week check up because they said they needed to do another heel prick because they didn't get enough blood the first time around. I questioned immediately if something was wrong and she said no, but my gut was telling me there was. So, the day came for his one week check up. I had to take him to the appt. myself since my husband is a coach and had a game to coach that evening. We went into the room, she checked everything out and asked the normal check up questions, then at the end of the visit, she non-chalantly said, and "Well, all of his tests for the newborn screening came back negative except he did test positive for CF". These will be words i will never forget as long as i live. My heart sunk and I looked at Tucker and thought, "this can't be happening . . . he is too perfect to have something wrong with him". After the doc told me, i asked what cf was. All she could tell me was that "he will fail to thrive". I was soooooooooooo upset that she told me about him testing positive for CF when i was there ALL by myself!! Hello? She could have called me the day of the appointment and said "you may want to have someone come with you because we have some concerns" or something to that effect. I mean, here I was, bawling my eyes out, shaking like a leaf, having a breakdown, and then I had to try to figure out how i was going to make it back home which was a 45 min. drive? Anyways, to make a long story short, I called my husband and was able to catch him before he left the house to go coach his game. He came to the clinic and when he walked in he had tears streaming down his face. We just sat and held each other for what seemed like eternity. A moment I will never forget! Since Tucker's dx. 4 years ago, i have written this specific clinic and strongly encouraged them to change their protocol as to how they go about breaking news like this to someone. But, unfortunately, I don't think they have made any changes. There is no easy way to break news like this to new parents, but I feel they could have done it a bit more respectfully and tactfully.
Jodi, Mom to Tucker 4 w/cf</end quote></div>
You poor things! I agree, there is no easy way to tell new parents, but respect, tact and sensitivity play an enormous part. There is no way I would want any parents to go through what me and my husband went through when we were told about our daughter. It was a nightmare! When we met with the Consultant he asked what we thought about the way we were told, and I said that they could have gone about it a better way. But as you say, I don't think they've made any changes either.
Charlotte<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
My daughter was diagnosed after department of family and children services had taken her and my son from me for her failure to thrive. She was born at 31 weeks and spent 8 weeks in NICU where they knew something was wrong with her but couldnt figure out what. When she was 5 months old we were sent 3 hours from home to a specialist to be tested for CF. The specialist told me this child doesnt have CF and im not testing her 3 weeks later DFCS took her 1 week after that she had pneumonia and was about dead and 1 week after that she was transferred to a childrens hospital where she was diagnosed within 3 days. What a rough life it has been for us....my children still spent 7 months in foster care even after they were proven wrong on the deprivation case that they claimed against me.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
oh!!!!!!!!!! another welshie<img src="i/expressions/face-icon-small-happy.gif" border="0"> janet from uk here. we are from s. wales . llantwit major, about 16 miles south of cardiff. we live in bristol now ( had to move with my husbands work) we will return to wales when aled retires ( about 15 yrs). it must have been uncomfortable for you to have found out all about cf with an "audience". i was unable to control my emotions when i found out . i cried solidly for days , i couldn't speak without crying. our son was sent for sweat test , i didn't even know why they were doing it . i kept saying to the man that did it, why? theres nothing wrong with him<img src="i/expressions/face-icon-small-confused.gif" border="0">. he never said what the test was for!!!!!!!!! my son had pnuemonia and was in hosp. for two weeks . nobody mentioned cf at all. what a horrible shock we had. we are dealing with it as best as we can though. but it is very hard for all of us. well you all know what i mean. take care. janet<img src="i/expressions/face-icon-small-wink.gif" border="0"></end quote></div>
Hi Janet
It was really uncomfortable with all those people in the room, so bad that after about 10 minutes I had to leave! I would have passed out otherwise. It is hard dealing with CF but you've just got to get on with it I suppose. They did a sweat test on our eldest daughter, even though she had the heel-prick test when she was born. I suppose they just wanted to be on the safe side (and so did we). I still feel angry about the way they told us to this day, but I suppose I've just gotta let it go for all our sakes. If you don't mind me asking have you got any other children? By the way, my brother lives in Cardiff. We are from Wrexham in Wales, my brother moved down to Cardiff when he started Uni and didn't come home. Him and his wife are expecting their first baby in July.
Speak to you again. Take care.
Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">
oh!!!!!!!!!! another welshie<img src="i/expressions/face-icon-small-happy.gif" border="0"> janet from uk here. we are from s. wales . llantwit major, about 16 miles south of cardiff. we live in bristol now ( had to move with my husbands work) we will return to wales when aled retires ( about 15 yrs). it must have been uncomfortable for you to have found out all about cf with an "audience". i was unable to control my emotions when i found out . i cried solidly for days , i couldn't speak without crying. our son was sent for sweat test , i didn't even know why they were doing it . i kept saying to the man that did it, why? theres nothing wrong with him<img src="i/expressions/face-icon-small-confused.gif" border="0">. he never said what the test was for!!!!!!!!! my son had pnuemonia and was in hosp. for two weeks . nobody mentioned cf at all. what a horrible shock we had. we are dealing with it as best as we can though. but it is very hard for all of us. well you all know what i mean. take care. janet<img src="i/expressions/face-icon-small-wink.gif" border="0"></end quote></div>
Hi Janet
It was really uncomfortable with all those people in the room, so bad that after about 10 minutes I had to leave! I would have passed out otherwise. It is hard dealing with CF but you've just got to get on with it I suppose. They did a sweat test on our eldest daughter, even though she had the heel-prick test when she was born. I suppose they just wanted to be on the safe side (and so did we). I still feel angry about the way they told us to this day, but I suppose I've just gotta let it go for all our sakes. If you don't mind me asking have you got any other children? By the way, my brother lives in Cardiff. We are from Wrexham in Wales, my brother moved down to Cardiff when he started Uni and didn't come home. Him and his wife are expecting their first baby in July.
Speak to you again. Take care.
Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">
hi charlotte, i do have another son , he is 19 yrs old. he is just starting to "turn the corner" ( anyone with older children will understand) blimey! teenagers are hard work!!!!!!!!!!!!!<img src="i/expressions/face-icon-small-frown.gif" border="0"> . he does not have cf 'cos he is from my first marriage. ( married too young) joe who does have cf is 8 yrs old. i count my blessings, 'cos although he does have the common , double delta gene??? he is in remarkable health . he was only dg 30 months ago after having pnuemonia. he takes after me and is very very active which i think is keeping his lungs healthy. the downside is he is really thin .( bless him) . he doesn't understand the "full" implications of having cf at the moment and thats the way we want to stay for the time being. though he does know how important it is to take his creon and do his "tapping". i think children can be quite resilient and take things in their stride if you don't make too much of a fuss!!( hope that doesn't upset anyone). what i mean is i am straight forward with him about cf. he was complaining about doing his inhaler,he was on that for three months not long ago,i just told him you have to do it and thats that!!!!!!!!!! obviously i know things will get a lot worse as he gets older and we will all have to adjust. it is very scary to think too far in advance, so i try not to. i have noticed you are on the site a lot more lately, charlotte , hope you don't mind me saying<img src="i/expressions/face-icon-small-blush.gif" border="0"> do you find you just have to? i am also on here daily now, i just feel drawn to it and don't know why.<img src="i/expressions/face-icon-small-confused.gif" border="0"> take care. janet ,welsh girl<img src="i/expressions/face-icon-small-wink.gif" border="0">