WEBVTT 00:00.000 --> 00:30.000 position:50% align:top line:0% *This machine-generated transcript may have errors. If remediation or a manually-generated transcript is needed, please contact NLM Support at https://support.nlm.nih.gov.* 00:01.429 --> 00:01.669 yeah, 00:01.679 --> 00:02.720 I'm Doctor Kirkman. 00:06.829 --> 00:07.340 Well, 00:07.349 --> 00:07.900 as you know, 00:09.729 --> 00:12.640 the purpose of our getting together this afternoon is to 00:13.550 --> 00:16.299 discuss the nature of the disease which 00:16.309 --> 00:19.190 Chris has and to talk a 00:19.200 --> 00:22.079 little bit about the chance that it might occur 00:22.090 --> 00:23.280 again in the family. 00:24.420 --> 00:25.020 Um, 00:25.100 --> 00:26.459 what is your understanding? 00:26.469 --> 00:27.370 Mrs Rutherford? 00:27.379 --> 00:29.270 And the problem that Chris has? 00:30.340 --> 00:30.790 Well, 00:30.799 --> 00:31.290 I don't, 00:31.299 --> 00:33.270 I don't really know too much about it. 00:33.279 --> 00:35.669 He seemed perfectly well. 00:35.799 --> 00:36.509 Um, 00:36.630 --> 00:39.310 he came home from the hospital fine and 00:39.520 --> 00:41.909 about a month old, 00:41.919 --> 00:43.299 he developed, 00:43.529 --> 00:43.830 um, 00:43.840 --> 00:46.819 some coughing and he started turning blue and 00:46.830 --> 00:49.139 I took him to doctor Andrews and 00:49.479 --> 00:51.869 he said that he thought he had pneumonia 00:52.240 --> 00:53.290 and, 00:53.299 --> 00:53.669 um, 00:54.240 --> 00:56.639 then he was referred up here to 00:56.650 --> 00:59.630 have better care because he became 00:59.639 --> 01:02.369 so sick and I don't really 01:02.380 --> 01:03.610 know too much. 01:04.919 --> 01:05.480 Let's see, 01:05.489 --> 01:06.169 Mr Rutherford. 01:06.180 --> 01:09.069 Did Dr Andrews give you a feeling as to as to 01:09.080 --> 01:10.569 how sick Chris really was. 01:10.580 --> 01:11.089 Well, 01:11.099 --> 01:14.019 I understand pneumonia is very serious and this is about as 01:14.029 --> 01:14.540 much as I, 01:14.550 --> 01:16.510 as I know right now of his condition. 01:17.550 --> 01:17.620 Yeah, 01:17.629 --> 01:18.779 we're very worried about it. 01:19.190 --> 01:19.800 Well, 01:19.809 --> 01:22.559 he's done rather poorly in our intensive 01:22.569 --> 01:25.010 care nursery and the 01:25.019 --> 01:26.349 residents down there. 01:26.360 --> 01:29.089 And the attending physician do feel that he has 01:29.099 --> 01:30.760 very severe pneumonia. 01:31.589 --> 01:31.690 Uh, 01:31.980 --> 01:34.190 and we're really quite worried about him. 01:35.139 --> 01:35.150 Uh, 01:35.160 --> 01:37.949 the condition which he has is 01:37.959 --> 01:39.989 called cystic fibrosis. 01:40.010 --> 01:41.730 Had either of you heard about that? 01:41.739 --> 01:41.989 No, 01:42.000 --> 01:42.190 no. 01:42.199 --> 01:42.910 Could you tell us? 01:43.709 --> 01:44.589 Well, 01:44.790 --> 01:45.699 it's, 01:45.709 --> 01:45.720 uh, 01:46.889 --> 01:48.580 a very serious disease. 01:48.589 --> 01:51.190 It is hereditary is capable of 01:51.199 --> 01:53.690 occurring again in the family and 01:53.699 --> 01:56.110 causes the lungs of a child to be rather 01:56.800 --> 01:59.559 susceptible to repeated attacks of 01:59.569 --> 02:01.790 pneumonia and 02:01.800 --> 02:04.709 also interferes with the normal digestion. 02:05.180 --> 02:07.910 This condition causes the secretion of 02:08.229 --> 02:10.139 ausin of very high viscosity. 02:10.720 --> 02:13.669 And if Chris is able to pull through 02:14.009 --> 02:15.669 this present hospitalization, 02:15.679 --> 02:17.949 which is a little bit 02:17.960 --> 02:19.220 unlikely, 02:20.070 --> 02:22.820 he will be prone to repeated attacks of pneumonia 02:22.960 --> 02:25.699 and to some extent to rather poor 02:25.929 --> 02:27.690 nutrition and growth failure. 02:29.059 --> 02:31.539 There are some things that can be done for it, 02:31.550 --> 02:34.070 but it is a condition that often limits 02:34.080 --> 02:36.470 life and can lead to, 02:37.240 --> 02:39.800 to death in adolescence or early adulthood. 02:39.809 --> 02:40.649 If not sooner. 02:40.660 --> 02:43.449 You mean you don't think that Chris will 02:43.500 --> 02:45.220 get out of the hospital? 02:45.820 --> 02:46.309 Well, 02:46.320 --> 02:46.759 he might, 02:46.770 --> 02:48.270 he's very sick right now. 02:48.279 --> 02:49.500 But if he does, 02:51.080 --> 02:53.820 there's a fair chance he'll be in the hospital over and over 02:53.830 --> 02:54.289 again. 02:55.350 --> 02:57.300 This condition is capable, 02:57.309 --> 03:00.000 as I mentioned of causing repeated 03:00.009 --> 03:01.330 attacks of pneumonia. 03:01.910 --> 03:04.380 But do you think that he would be able to survive? 03:05.220 --> 03:08.210 I don't know he's 03:08.220 --> 03:10.080 very precarious right now. 03:11.039 --> 03:13.669 We'll just have to see we're doing the best we can. 03:14.860 --> 03:17.750 I do need to get a 03:17.759 --> 03:19.660 little information on your family. 03:20.460 --> 03:23.050 We do not have the records from 03:23.059 --> 03:25.860 doctor Andrews as to what was 03:25.869 --> 03:27.369 happening with Chris earlier. 03:27.380 --> 03:28.729 He's a month old now, 03:28.740 --> 03:29.460 I believe. 03:30.300 --> 03:33.279 And we'll have to write Doctor Andrews and get 03:33.289 --> 03:34.259 those records. 03:36.119 --> 03:38.940 Did you come prepared with any sort of 03:38.949 --> 03:40.029 family information? 03:40.039 --> 03:42.960 I guess we didn't warn you that we'd be asking you quite a bit about your 03:42.970 --> 03:43.559 family. 03:45.880 --> 03:48.410 Let's start with Mrs Rutherford. 03:53.820 --> 03:54.910 Let's see, 03:55.800 --> 03:57.779 Chris is your only child. 03:58.100 --> 03:58.759 You have, 03:58.770 --> 04:00.330 you had any miscarriages? 04:09.500 --> 04:11.580 And I have two younger brothers. 04:13.539 --> 04:14.169 Let's see. 04:14.179 --> 04:15.589 Are either of them married? 04:15.600 --> 04:15.820 No, 04:15.830 --> 04:16.790 they're both single. 04:23.160 --> 04:24.049 All right. 04:24.329 --> 04:25.010 Um, 04:26.769 --> 04:28.299 and I understand that, 04:28.350 --> 04:28.359 uh, 04:29.709 --> 04:32.500 this child is in good health and has not been 04:32.510 --> 04:34.739 having any coughing or pneumonia. 04:36.019 --> 04:39.010 Do you know of any relatives or anyone in the family 04:39.019 --> 04:41.869 who has had Children with repeated attacks of 04:41.880 --> 04:42.600 pneumonia? 04:43.739 --> 04:46.709 I'm not aware of in trouble with absorption 04:46.720 --> 04:47.549 of food, 04:47.559 --> 04:48.920 poor growth. 04:49.350 --> 04:51.790 You haven't heard the word cystic fibrosis 04:51.799 --> 04:53.320 used in connection with, 04:53.329 --> 04:54.519 with any of your relatives. 04:55.839 --> 04:58.489 Do the two of you feel that you are related by 04:58.500 --> 05:01.029 blood in any way that you know of or you distant 05:01.510 --> 05:02.350 conceivable? 05:05.369 --> 05:05.890 Well, 05:05.899 --> 05:06.890 this condition, 05:08.440 --> 05:09.089 oh, 05:09.760 --> 05:12.230 here's one that's hereditary 05:13.609 --> 05:16.010 and is determined by genes 05:16.019 --> 05:18.589 present that are 05:18.600 --> 05:21.279 capable of causing the child to 05:21.290 --> 05:24.230 have mucin of high viscosity that is 05:24.239 --> 05:26.850 very sticky mucus, 05:26.859 --> 05:29.730 which plugs up the bronchial 05:29.739 --> 05:30.459 tubes. 05:30.970 --> 05:33.970 It seems to cause the repeated attacks of pneumonia, 05:33.980 --> 05:36.609 which they have this very 05:36.619 --> 05:36.989 sticky, 05:37.000 --> 05:39.609 mucus can also plug up the pancreas. 05:39.619 --> 05:42.480 So the pancreas doesn't function properly. 05:43.269 --> 05:45.839 Uh Had you noticed that Chris was passing 05:45.850 --> 05:47.839 stools of unusual odor or? 05:49.209 --> 05:49.859 Well, 05:49.869 --> 05:51.179 this is my first baby. 05:51.209 --> 05:53.100 I don't really know. 05:53.109 --> 05:53.250 Um, 05:53.260 --> 05:55.739 but everything seemed normal to me. 05:56.950 --> 05:59.890 Had you noticed that he tasted salty when you kissed him, 05:59.899 --> 06:00.720 kissed him? 06:03.420 --> 06:04.619 It is true that, 06:04.950 --> 06:04.959 uh, 06:04.970 --> 06:07.029 in addition to having uh, 06:07.040 --> 06:09.630 stools that are very strong smelling due to the 06:09.640 --> 06:12.179 pancreatic insufficiency that 06:12.190 --> 06:14.920 these Children are prone to 06:15.019 --> 06:15.899 sweat. 06:16.079 --> 06:19.040 A type of sweat with a very high salt 06:19.049 --> 06:19.959 concentration. 06:20.779 --> 06:22.600 And some mothers notice this, 06:22.609 --> 06:24.480 that when they kiss their baby, 06:24.489 --> 06:27.459 the baby actually does taste salty. 06:27.850 --> 06:29.279 But more importantly, 06:29.290 --> 06:32.290 this will mean that if Chris can survive 06:32.299 --> 06:34.029 his present hospitalization, 06:34.040 --> 06:36.869 that he will be uh needing to 06:36.880 --> 06:39.269 be on extra salt during hot weather. 06:39.279 --> 06:42.010 Do you have air conditioning at your home in Wilmington or? 06:42.119 --> 06:42.410 Yes, 06:42.420 --> 06:42.859 we do. 06:42.869 --> 06:45.739 So this may not be quite so much a problem in the summer. 06:47.260 --> 06:47.510 Well, 06:47.519 --> 06:50.250 it is important to realize that this 06:50.260 --> 06:50.700 is a, 06:51.489 --> 06:54.299 a disease capable of affecting a child in 06:54.309 --> 06:57.140 this way and that it is inherited. 06:58.790 --> 07:00.920 We know that the 07:00.929 --> 07:03.709 risk for your future 07:03.720 --> 07:06.000 Children is 25%. 07:06.220 --> 07:09.010 Each of your future Children would 07:09.019 --> 07:12.019 run about a 25% or one in four 07:12.029 --> 07:14.299 risk being similarly 07:14.309 --> 07:15.100 affected. 07:15.609 --> 07:18.529 The disease is unlikely to strike elsewhere in 07:18.540 --> 07:19.179 the family 07:21.140 --> 07:23.570 you discussed uh 07:24.290 --> 07:26.619 how many Children you were planning to have or? 07:27.029 --> 07:27.529 Well, 07:27.540 --> 07:28.519 we had But now, 07:28.529 --> 07:30.940 I guess we should have second thoughts about the number. 07:30.950 --> 07:32.970 Uh Is there any way to find out 07:33.290 --> 07:34.320 if, 07:34.329 --> 07:34.380 uh, 07:34.450 --> 07:35.880 once my wife is pregnant, 07:35.890 --> 07:37.700 if the child is affected, 07:38.760 --> 07:40.510 not at the present time, 07:40.589 --> 07:43.049 we can do this for certain of the 07:43.059 --> 07:44.230 hereditary problem. 07:44.970 --> 07:47.459 The chromosome abnormalities, 07:47.470 --> 07:50.260 one form of which causes the condition we call 07:50.269 --> 07:53.239 down syndrome or Mongolism can 07:53.250 --> 07:56.079 be diagnosed in the unborn fetus fairly 07:56.089 --> 07:57.339 early in the pregnancy. 07:58.239 --> 08:00.950 We can carry out pre 08:00.959 --> 08:03.700 natal or antenatal diagnosis as we call it 08:03.920 --> 08:06.769 in early pregnancy for certain of the hereditary 08:06.779 --> 08:08.209 chemical abnormalities. 08:08.890 --> 08:11.640 But uh we can't do this at the present 08:11.649 --> 08:13.130 time for cystic fibrosis. 08:13.899 --> 08:15.559 Would you be interested in, 08:15.709 --> 08:18.380 in having such tests done if they became a 08:20.970 --> 08:22.000 uh Mrs Rutherford, 08:22.010 --> 08:24.899 what is your feeling about abortion? 08:24.910 --> 08:27.850 If such a test were possible and reveal that the 08:27.859 --> 08:29.049 fetus was effective? 08:29.750 --> 08:30.500 Well, 08:30.510 --> 08:31.309 I, 08:31.720 --> 08:32.260 I don't know, 08:32.270 --> 08:34.320 this is all new to me. 08:34.330 --> 08:36.659 I'm at this point, 08:37.398 --> 08:40.338 I'm not sure I want to try to have any more kids 08:40.348 --> 08:43.208 if they are gonna be sick like this. 08:43.218 --> 08:43.739 II, 08:43.749 --> 08:44.309 I mean, 08:44.318 --> 08:45.869 I'm just not prepared 08:46.919 --> 08:47.849 maybe later. 08:47.859 --> 08:49.200 I can think about it. 08:50.840 --> 08:51.200 Well, 08:51.210 --> 08:53.270 this abnormal gene is fairly 08:53.280 --> 08:54.390 prevalent. 08:55.130 --> 08:57.570 We feel that about 5% 08:58.049 --> 09:00.510 of the population 09:00.520 --> 09:03.309 carries this abnormal gene and both of you 09:03.969 --> 09:06.950 carry this hereditary tendency 09:08.559 --> 09:11.479 and this is what leaves each of your future 09:11.489 --> 09:14.440 Children at a one in four risk 09:14.450 --> 09:17.289 for having a problem similar to Chris. 09:18.330 --> 09:19.799 Now you have 09:21.799 --> 09:23.090 several possibilities. 09:23.099 --> 09:25.789 You could pursue this being your only child 09:28.760 --> 09:31.750 and the distinct possibility that Chris 09:31.760 --> 09:34.729 may not survive his present very severe attack 09:34.739 --> 09:35.390 of pneumonia. 09:36.419 --> 09:39.309 You may wish to just run the one in 09:39.320 --> 09:42.090 four or 25% risk with 09:42.099 --> 09:43.289 another pregnancy. 09:44.119 --> 09:45.460 As you may know, 09:45.469 --> 09:48.309 babies are very difficult to obtain 09:48.320 --> 09:49.270 by adoption. 09:49.280 --> 09:49.690 Now, 09:50.219 --> 09:53.090 with stronger family planning and 09:53.099 --> 09:55.950 the more liberalized abortion laws, 09:56.140 --> 09:58.770 fewer and fewer babies are being put up for 09:58.780 --> 09:59.530 adoption. 09:59.539 --> 10:02.200 So it might not be wise to count 10:02.210 --> 10:04.960 on the definite possibility of 10:04.969 --> 10:06.090 adopting a baby. 10:07.909 --> 10:10.369 You could avoid further 10:10.380 --> 10:12.890 pregnancies talking with doctor Andrews in 10:12.900 --> 10:15.489 Wilmington as to what measures you might 10:15.500 --> 10:18.219 take even including sterilization. 10:19.020 --> 10:21.950 Um But at the present time, 10:21.960 --> 10:24.580 we have no way of uh of 10:24.590 --> 10:27.520 offering antenatal diagnosis or any way of telling you with 10:27.530 --> 10:28.219 these pregnancy. 10:28.229 --> 10:30.710 Do you think there's any hope in the future of being able to 10:30.719 --> 10:31.440 diagnose? 10:33.630 --> 10:33.979 Well, 10:33.989 --> 10:35.020 we just can't say yet. 10:35.030 --> 10:37.919 We don't understand what the basic nature of cystic 10:37.929 --> 10:39.179 fibrosis is. 10:39.190 --> 10:40.219 As I say, 10:40.229 --> 10:40.650 we, 10:41.330 --> 10:44.270 we feel that one of the serious problems 10:44.280 --> 10:47.140 is this use in a very high viscosity which 10:48.000 --> 10:50.840 causes repeated pneumonia and 10:51.049 --> 10:52.809 because of that and the 10:54.130 --> 10:56.450 disturbance of pancreatic function, 10:56.460 --> 10:59.409 it tends to cause a growth failure along with it. 11:01.260 --> 11:03.890 You don't think there's any chance that 11:03.900 --> 11:06.609 my nephew will be sick too. 11:07.780 --> 11:08.179 No, 11:08.190 --> 11:10.729 I think it's a little bit unlikely. 11:11.090 --> 11:13.130 It might be wise to have 11:13.900 --> 11:16.590 him checked by uh your 11:16.599 --> 11:19.409 brother's position there and see 11:19.419 --> 11:20.260 how he's doing, 11:20.270 --> 11:23.219 but it's rather unlikely we're mainly concerned about your 11:23.229 --> 11:26.190 future Children and the one in four risks 11:26.200 --> 11:27.869 that they would be affected. 11:28.960 --> 11:29.159 Well, 11:29.169 --> 11:31.200 if you have any further questions, 11:31.530 --> 11:34.390 please don't hesitate to call or write 11:34.969 --> 11:37.539 and we'll be sending doctor 11:37.549 --> 11:40.500 Andrews a very brief report to the effect 11:40.510 --> 11:43.049 that we met and discussed this matter. 11:43.609 --> 11:46.580 And I hope you are able to find that Chris 11:46.590 --> 11:49.239 is doing better this week and we sure hope so. 11:49.330 --> 11:50.549 Nice to admit to you. 11:50.559 --> 11:50.909 Thank you, 11:50.919 --> 11:51.179 doctor. 13:10.119 --> 13:10.809 Hello. 13:11.479 --> 13:11.510 Uh, 13:11.580 --> 13:12.770 you're the other friends. 13:13.559 --> 13:14.369 How are you? 13:14.479 --> 13:14.969 Hello? 13:16.390 --> 13:16.409 Uh, 13:16.450 --> 13:19.200 my name is Helen Henshaw and I'm 13:19.210 --> 13:21.979 Doctor Kirkman's assistant and 13:21.989 --> 13:23.609 he has been detained with, 13:24.080 --> 13:27.030 with some patients and um, 13:27.710 --> 13:30.010 he is not going to be able to be here right away. 13:30.020 --> 13:31.400 He'll be here in just a minute. 13:31.409 --> 13:33.960 So he asked me to come in and 13:33.969 --> 13:36.400 see that everything is ok and 13:36.989 --> 13:39.830 see if you have information that I think he 13:39.840 --> 13:40.960 asked you to bring. 13:40.969 --> 13:42.880 I believe he asked you to bring, 13:42.890 --> 13:43.359 um, 13:43.369 --> 13:45.059 information on your family. 13:45.229 --> 13:45.299 Yeah, 13:45.309 --> 13:46.059 we haven't. 13:46.520 --> 13:47.000 Ok. 13:47.010 --> 13:47.570 That's good. 13:47.580 --> 13:50.169 We'll heal along if you can have that ready for him when he 13:50.179 --> 13:50.719 comes, 13:50.729 --> 13:53.580 that'll save him some time. 13:54.390 --> 13:54.760 Did, 13:54.780 --> 13:55.150 um, 13:55.659 --> 13:56.010 I, 13:56.510 --> 13:58.820 he told me that he did receive a letter 13:58.830 --> 14:00.369 from your doctor, 14:00.380 --> 14:01.880 Doctor Andrews in 14:02.229 --> 14:03.489 Wilmington. 14:03.500 --> 14:06.419 And so that will help a great deal in his discussion 14:06.429 --> 14:06.919 with you. 14:08.049 --> 14:08.239 But, 14:08.250 --> 14:08.270 um, 14:08.280 --> 14:09.780 how is your child? 14:09.789 --> 14:09.799 Er, 14:11.270 --> 14:12.179 he is, 14:12.190 --> 14:13.369 I'm sorry to hear that. 14:14.469 --> 14:15.059 Um, 14:15.070 --> 14:15.359 is, 14:15.369 --> 14:15.640 he's, 14:15.650 --> 14:17.340 he's here on the intensive care unit. 14:17.349 --> 14:17.760 Now, 14:18.309 --> 14:18.770 um, 14:18.989 --> 14:21.229 did you drive up this morning from Wilmington? 14:22.489 --> 14:22.989 You did? 14:23.000 --> 14:23.219 That's, 14:23.229 --> 14:24.270 that's a long drive. 14:24.280 --> 14:26.960 Are you planning to stay here in Chapel Hill for a while or? 14:26.969 --> 14:27.219 You, 14:28.200 --> 14:29.539 you aren't going to go home? 14:30.349 --> 14:33.309 Is this causing a problem with the jobs or 14:33.320 --> 14:34.099 family or? 14:34.700 --> 14:35.590 It actually is, 14:35.599 --> 14:36.390 but it's, 14:36.659 --> 14:38.599 we sacrifice it. 14:38.609 --> 14:38.640 It, 14:38.650 --> 14:40.960 main thing is just the shock, 14:40.969 --> 14:41.219 you know, 14:41.229 --> 14:43.539 because the baby was so, 14:43.799 --> 14:46.059 uh I'm sure I'm sure of that. 14:46.190 --> 14:46.440 Have, 14:46.450 --> 14:49.450 have you been informed as to the diagnosis of the 14:49.460 --> 14:49.900 child? 14:49.909 --> 14:49.940 Yeah, 14:49.950 --> 14:51.780 we know it's fibrosis, 14:51.950 --> 14:54.109 um told of its nature, 14:54.429 --> 14:54.929 right? 14:56.130 --> 14:56.650 Ok. 14:56.659 --> 14:56.969 Well, 14:56.979 --> 14:58.049 I'm sure um, 14:58.080 --> 15:00.250 Doctor Putman will be glad to speak to you. 15:00.320 --> 15:01.940 He should be in any time. 15:07.500 --> 15:10.500 Our purpose for gathering this afternoon is to 15:10.830 --> 15:13.630 talk about the possibility that this 15:13.640 --> 15:16.020 problem which Chris has might occur 15:16.030 --> 15:17.700 again in the family. 15:18.739 --> 15:20.690 And I believe you've heard from uh 15:21.630 --> 15:24.570 Doctor Andrews and from the physicians in the intensive 15:24.580 --> 15:26.179 care nursery already. 15:26.190 --> 15:28.049 The diagnosis. 15:28.710 --> 15:31.239 And what is your 15:31.250 --> 15:33.869 understanding of the nature of the disease? 15:34.010 --> 15:36.099 Were they able to go into this with you? 15:37.609 --> 15:38.169 Well, 15:38.179 --> 15:39.179 they did uh, 15:39.190 --> 15:40.440 some, 15:40.450 --> 15:40.760 I, 15:40.770 --> 15:43.200 I'm not sure I still have everything straight, 15:43.210 --> 15:45.539 but they did say that it was cystic 15:45.549 --> 15:48.080 fibrosis and that it 15:48.090 --> 15:50.539 was some sort of 15:50.549 --> 15:52.830 abnormality of the 15:52.840 --> 15:55.250 secretion so that uh 15:55.260 --> 15:57.719 Chris's mucus is 15:57.739 --> 15:59.580 sped up somehow. 15:59.590 --> 16:01.650 It's thicker than it should be 16:02.010 --> 16:04.880 and that this causes his 16:05.340 --> 16:07.789 pancreas to be 16:08.539 --> 16:09.469 abnormal. 16:09.479 --> 16:11.909 I don't know exactly how and for 16:11.919 --> 16:14.700 him not to absorb food 16:14.710 --> 16:17.229 as well and 16:17.409 --> 16:19.380 that he might 16:19.500 --> 16:22.270 be prone to getting pneumonia 16:22.280 --> 16:23.109 like he has. 16:23.119 --> 16:23.590 Now, 16:25.030 --> 16:28.000 did you get the same impression Mr Rutherford as to 16:28.010 --> 16:29.320 the nature of Chris's problem? 16:29.599 --> 16:29.890 Yes, 16:29.900 --> 16:30.900 pretty much so. 16:30.909 --> 16:31.919 And that, 16:31.929 --> 16:31.950 uh, 16:32.580 --> 16:34.440 there's some problem with, 16:34.450 --> 16:34.520 uh, 16:34.859 --> 16:37.679 sweating too much salt out and problems with 16:37.690 --> 16:40.280 dehydration and that they 16:40.289 --> 16:41.479 informed us that, 16:41.489 --> 16:41.500 uh, 16:41.510 --> 16:43.669 if we didn't have our house air conditioned, 16:43.679 --> 16:46.150 that we should just be a big help in the summer. 16:46.409 --> 16:48.979 Provide that uh that he makes it. 16:50.539 --> 16:53.159 What is your feeling as to how sick Chris is? 16:53.169 --> 16:53.739 Now? 16:53.799 --> 16:55.919 He's extremely sick. 16:57.960 --> 17:00.690 I think it's very important that you realize 17:00.700 --> 17:03.559 that in addition to 17:03.570 --> 17:06.469 causing trouble and your baby who is only one month old, 17:06.479 --> 17:09.310 now that this disease can cause 17:09.319 --> 17:10.660 repeated pneumonia, 17:10.939 --> 17:13.420 that these Children can 17:13.430 --> 17:15.189 live and survive on up to 17:15.290 --> 17:18.060 teenage and adulthood. 17:19.219 --> 17:21.750 But at the expense of requiring rather 17:21.760 --> 17:24.680 frequent hospitalization and frequent 17:24.689 --> 17:26.010 visits to the physician, 17:26.729 --> 17:29.469 things can be done if Chris can pull through this 17:29.479 --> 17:31.170 very severe attack of pneumonia, 17:31.180 --> 17:32.359 which he has now, 17:32.839 --> 17:35.770 we can offer him a special 17:35.780 --> 17:38.270 diet which will help him absorb 17:38.280 --> 17:40.239 his nourishment much better. 17:40.250 --> 17:43.160 Despite his problem with the pancreas, 17:43.819 --> 17:46.670 he can be protected to a considerable extent 17:46.680 --> 17:49.510 from pneumonia by antibiotics. 17:49.520 --> 17:51.989 And there are postural drainage 17:52.000 --> 17:54.640 exercises and other 17:54.650 --> 17:57.400 techniques for helping to diminish the 17:57.410 --> 17:59.150 number of infections he has. 18:00.010 --> 18:02.670 But I want you to realize that the 18:02.680 --> 18:04.670 picture you're seeing in Chris. 18:04.680 --> 18:07.339 Now at one month of age is 18:07.349 --> 18:10.060 not the typical picture of 18:10.069 --> 18:11.520 cystic fibrosis. 18:12.459 --> 18:15.319 It is not a disease which simply results in an 18:15.329 --> 18:17.380 attack of pneumonia and death. 18:17.390 --> 18:18.719 At one month of age, 18:19.150 --> 18:22.140 Chris has been unfortunate in having an unusually 18:22.150 --> 18:23.869 severe attack of pneumonia 18:24.650 --> 18:27.520 very early but more often than not, 18:27.530 --> 18:30.109 these Children do go on 18:30.119 --> 18:32.810 living up into late childhood at 18:32.819 --> 18:33.280 least, 18:33.290 --> 18:35.359 but with repeated attacks of pneumonia. 18:36.140 --> 18:38.790 So I think that needs to be kept in mind 18:38.849 --> 18:41.719 when you're thinking about your 18:41.729 --> 18:44.579 family planning practices and how many Children you 18:44.589 --> 18:45.510 plan to have. 18:48.280 --> 18:50.959 We have quite a bit of information that 18:50.969 --> 18:52.790 Doctor John Andrews sent us. 18:52.800 --> 18:53.670 And of course, 18:53.680 --> 18:56.469 the doctors in the intensive care nursery and 18:56.479 --> 18:58.469 my visit down there indicates 18:59.189 --> 19:02.150 that Chris does have cystic fibrosis. 19:02.160 --> 19:04.969 His sweat test was quite positive as you 19:04.979 --> 19:05.439 know, 19:05.959 --> 19:08.819 and so that we're going to be talking mainly now 19:08.829 --> 19:11.630 about just the 19:11.640 --> 19:14.500 possibility that this could affect someone in the 19:14.510 --> 19:15.500 family again. 19:16.510 --> 19:19.010 Um Let's see, 19:19.020 --> 19:21.489 you have some information on your family already. 19:21.500 --> 19:23.439 Does it come from the family Bible or 19:24.180 --> 19:25.910 mostly from memory from my, 19:28.810 --> 19:30.869 usually there is a, 19:30.880 --> 19:33.880 an old made ant in the family who's the 19:33.890 --> 19:36.800 expert on the family tree and many of our husbands and 19:36.810 --> 19:38.119 wives consult with, 19:38.130 --> 19:38.939 with that aunt. 19:39.790 --> 19:42.550 But now why don't we start uh 19:42.760 --> 19:45.579 with Chris and uh any 19:45.589 --> 19:48.339 other pregnancies that you've had Mrs Rutherford? 19:48.739 --> 19:49.280 No, 19:49.290 --> 19:51.859 Chris is the only one you've had no 19:52.020 --> 19:53.319 miscarriages, 19:53.329 --> 19:55.239 no stillbirths at all. 20:02.810 --> 20:03.579 And let's see, 20:03.589 --> 20:04.329 Mrs Rutherford. 20:04.339 --> 20:05.449 How old are you now? 20:05.699 --> 20:06.780 I'm 23. 20:07.849 --> 20:09.250 And how is your health? 20:09.569 --> 20:11.260 Uh My health is fine 20:30.719 --> 20:32.709 and I have two younger brothers. 20:33.209 --> 20:34.770 Uh David and Martin. 20:34.780 --> 20:36.290 David is 20 20:42.959 --> 20:44.760 and Martin is 15. 20:48.119 --> 20:49.630 And how is David's health? 20:49.640 --> 20:50.390 Fine. 20:50.400 --> 20:50.959 Fine. 20:52.079 --> 20:52.839 So is Mark, 20:55.920 --> 20:58.910 we haven't had to go to the doctor frequently for any problem. 21:00.010 --> 21:00.739 Not at all. 21:02.660 --> 21:04.229 And I understand that, 21:04.239 --> 21:04.250 uh, 21:04.260 --> 21:07.199 neither of your parents was having any problem with the health. 21:07.209 --> 21:07.680 Is that right? 21:07.689 --> 21:08.469 No, 21:08.479 --> 21:09.109 no. 21:09.119 --> 21:09.969 But if you, 21:09.979 --> 21:11.520 if you want to go back farther, 21:11.530 --> 21:14.140 I did have a great uncle who 21:14.150 --> 21:16.640 had bouts with, 21:16.650 --> 21:18.260 with bad lungs. 21:20.520 --> 21:21.510 Ok. 21:21.520 --> 21:22.849 Long way back. 21:24.390 --> 21:25.069 No. 21:26.599 --> 21:28.209 Are there any members of the family? 21:28.219 --> 21:30.849 I haven't shown here who are having problems with their health? 21:32.060 --> 21:34.449 Any signs of premature uh, 21:34.459 --> 21:37.170 deterioration or aging of 21:37.180 --> 21:39.819 mind or kidney or liver 21:39.829 --> 21:40.579 failure? 21:40.739 --> 21:41.189 Well, 21:41.199 --> 21:41.829 my, 21:41.839 --> 21:44.670 my sister in law is having 21:44.949 --> 21:46.650 some kidney trouble now. 21:47.010 --> 21:48.000 This is right. 21:49.109 --> 21:51.829 And her father actually died of 21:51.839 --> 21:52.869 kidney failure. 21:53.060 --> 21:53.119 Oh, 21:53.219 --> 21:54.880 about how old was he when that happened? 21:55.020 --> 21:56.599 He was rather young. 21:56.609 --> 21:58.250 I think about 45. 21:59.040 --> 21:59.650 Oh. 22:03.380 --> 22:06.300 Did you hear anyone say what might have been the problem causing this 22:06.310 --> 22:07.770 kidney trouble in her father? 22:08.729 --> 22:09.920 Failure, 22:09.930 --> 22:10.900 kidney failure? 22:10.910 --> 22:12.119 That's all I ever heard. 22:12.130 --> 22:14.699 They seem to be watching Fran 22:14.709 --> 22:17.520 fairly closely to find out 22:17.530 --> 22:18.729 what exactly, 22:19.339 --> 22:19.670 you know, 22:19.680 --> 22:22.599 whether she's gonna have something severe wrong with him or 22:22.609 --> 22:23.020 not. 22:23.719 --> 22:26.319 The father died at about 45 or in his forties 22:26.329 --> 22:26.780 anyway. 22:26.849 --> 22:27.180 Yeah. 22:27.959 --> 22:30.959 And Fran is 24 now and is beginning to have some 22:30.969 --> 22:31.890 kidney trouble. 22:38.530 --> 22:39.550 Ok. 22:39.630 --> 22:42.489 But in addition to the fact that there were no Children 22:42.500 --> 22:45.489 with repeated attacks of pneumonia or severe 22:45.500 --> 22:46.140 growth failure, 22:46.150 --> 22:48.609 there are no problems with the health of the family that you know, 22:48.619 --> 22:49.640 of other than these, 22:49.650 --> 22:51.349 that we've shown your, 22:51.439 --> 22:53.880 your mother has had diabetes recently, 22:53.890 --> 22:54.219 I believe. 22:56.640 --> 22:57.640 Ok. 22:57.819 --> 22:58.469 Now, 22:58.479 --> 23:01.250 do the two of you feel that you're related in any way by 23:01.260 --> 23:02.290 blood that you know of? 23:03.150 --> 23:03.170 No, 23:03.390 --> 23:03.719 not at all? 23:03.890 --> 23:04.119 No, 23:04.640 --> 23:04.979 absolutely not. 23:05.619 --> 23:05.869 Uh, 23:05.880 --> 23:08.609 does the same last name appear in the 23:08.619 --> 23:10.189 family on either side? 23:11.800 --> 23:14.310 You don't have any Rutherford's on your side of the family 23:15.750 --> 23:17.670 and no Smiths on your side of the family, 23:18.260 --> 23:20.750 are your relatives from the same county? 23:20.760 --> 23:22.790 The same part of actually, 23:22.800 --> 23:25.349 now Lewis is from around 23:25.359 --> 23:27.189 here and I'm from California. 23:27.199 --> 23:27.489 So, 23:28.910 --> 23:29.869 and you know, 23:29.880 --> 23:32.819 of no one in the family who considers it your distant cousins in 23:32.829 --> 23:33.689 some way? 23:34.739 --> 23:35.560 Very good. 23:39.280 --> 23:39.729 Well, 23:39.739 --> 23:41.099 Mrs Rutherford, 23:41.109 --> 23:41.160 uh, 23:42.260 --> 23:44.849 what is your feeling as to how cystic fibrosis 23:44.859 --> 23:45.670 occurred? 23:46.849 --> 23:49.680 Did you have some feeling before you talked with the 23:49.689 --> 23:52.640 doctors in our intensive care nursery as to what might 23:52.650 --> 23:54.579 have been the cause of Chris's problems? 23:54.589 --> 23:55.359 Well, 23:56.270 --> 23:59.030 I actually, 23:59.040 --> 24:02.030 I feel that it's 24:02.040 --> 24:03.800 the disease and I under I 24:04.099 --> 24:06.989 understand the hereditary part 24:07.369 --> 24:08.680 now a little better, 24:08.689 --> 24:09.449 although I don't, 24:09.459 --> 24:11.630 I don't understand why other people 24:12.349 --> 24:13.959 aren't sick too, 24:14.369 --> 24:17.300 but there is some talk in the 24:17.310 --> 24:18.199 family. 24:18.209 --> 24:20.869 I don't think they understand and we've been 24:20.880 --> 24:23.010 getting a little static because, 24:23.339 --> 24:23.719 well, 24:23.729 --> 24:25.829 especially because I worked 24:26.790 --> 24:28.920 well all the way through my seventh 24:28.930 --> 24:29.800 month. 24:29.810 --> 24:30.699 And, 24:30.709 --> 24:31.000 um, 24:32.339 --> 24:35.089 Lewis's mother special thinks that that's, 24:35.390 --> 24:35.609 that, 24:35.619 --> 24:36.619 that's what's wrong. 24:37.640 --> 24:40.550 It would be nice if you could, 24:40.560 --> 24:41.369 you know, 24:41.729 --> 24:44.640 you mentioned something about a letter if you 24:44.650 --> 24:47.520 could put that in the letter for her to say that would 24:47.530 --> 24:49.930 be nice if she doesn't understand such things. 24:49.939 --> 24:49.979 Well, 24:49.989 --> 24:50.500 what about you, 24:50.510 --> 24:51.170 Mr Rutherford? 24:51.180 --> 24:53.569 Do you find members of your wife's family or? 24:54.839 --> 24:55.459 Well, 24:56.599 --> 24:56.800 they, 24:56.810 --> 24:58.939 they're aware that it is 24:59.260 --> 25:01.839 inherited and 11 thing 25:01.849 --> 25:04.569 we'd like to know from you is 25:04.579 --> 25:07.500 since it's never happened before in our 25:07.510 --> 25:10.099 family or ever suspect it happened before in our 25:10.109 --> 25:10.709 family. 25:10.829 --> 25:11.859 Why did it happen? 25:11.869 --> 25:13.199 The service at this point? 25:15.079 --> 25:16.229 Is it just, 25:16.239 --> 25:17.729 it's merely odds. 25:18.880 --> 25:19.349 Yes. 25:19.359 --> 25:21.810 In a way cystic fibrosis 25:21.819 --> 25:24.510 belongs to a very large 25:24.520 --> 25:27.430 group of uh hereditary diseases in 25:27.439 --> 25:28.459 human beings. 25:28.469 --> 25:30.880 About half or two thirds 25:31.319 --> 25:33.869 of the 1000 or more hereditary 25:33.880 --> 25:36.829 problems in men belong to the group 25:36.839 --> 25:38.979 that we call autosomal recessive. 25:40.170 --> 25:42.900 And these are diseases which occur in 25:42.910 --> 25:45.780 the affected child only 25:46.010 --> 25:48.439 if the child receives an abnormal 25:48.449 --> 25:50.939 gene from both parents. 25:52.020 --> 25:54.719 We feel that Chris inherited the 25:54.729 --> 25:57.589 gene from cystic fibrosis from both of you 25:58.530 --> 26:01.359 and that this gene has been present on both 26:01.369 --> 26:03.770 sides of the family for many 26:03.780 --> 26:04.780 generations. 26:05.760 --> 26:07.619 So you shouldn't feel, 26:07.630 --> 26:10.439 don't let any in laws tell you that this is coming from the other 26:10.449 --> 26:11.319 side of the family. 26:11.329 --> 26:14.150 It's coming from both sides of the family and the 26:14.160 --> 26:17.099 gene has been present in more or less hidden form 26:17.760 --> 26:20.619 being carried by people who 26:20.630 --> 26:22.849 have the gene in only a single dose. 26:23.579 --> 26:26.380 Such people are called heterozygote 26:26.969 --> 26:29.119 or said to be heterozygous with cystic 26:29.130 --> 26:30.109 fibrosis. 26:31.040 --> 26:33.979 And each person 26:33.989 --> 26:36.910 who carries a gene has received it from one of his 26:36.920 --> 26:38.650 parents or one of her parents. 26:39.319 --> 26:42.260 So long as the human being receives the 26:42.270 --> 26:45.050 gene for cystic fibrosis from only one parent, 26:45.660 --> 26:47.969 he's free of any symptoms of the disease, 26:47.979 --> 26:49.449 any problems with the disease. 26:50.140 --> 26:53.109 So you shouldn't feel that either of you 26:53.119 --> 26:54.489 is prone to develop 26:55.829 --> 26:58.699 pneumonia or digestive problems or to 26:58.709 --> 27:01.670 have any symptoms of cystic fibrosis whatsoever. 27:01.900 --> 27:04.869 Each of you has received this gene from one 27:04.880 --> 27:07.869 of your parents and only a single dose. 27:08.589 --> 27:11.319 The unfortunate thing about Chris is that 27:12.400 --> 27:15.140 he received this abnormal gene from both of you. 27:15.150 --> 27:17.560 So he has the gene for 27:17.569 --> 27:20.500 hereditary information and double 27:20.510 --> 27:20.849 dose. 27:21.959 --> 27:22.660 No. 27:23.989 --> 27:26.810 Uh this means that 27:27.510 --> 27:30.189 the future Children that you 27:30.199 --> 27:32.989 have are at risk for having cystic fibrosis. 27:33.000 --> 27:35.719 And this is one of the main reasons for 27:35.729 --> 27:37.280 talking this afternoon. 27:38.430 --> 27:40.939 Each of your future Children 27:41.270 --> 27:43.569 runs a one in four chance 27:44.339 --> 27:46.699 of having cystic fibrosis. 27:47.160 --> 27:47.180 Now, 27:47.199 --> 27:50.150 this is not the same as to say that 27:50.969 --> 27:53.680 1/4 of your future Children will have cystic 27:53.689 --> 27:54.400 fibrosis. 27:54.410 --> 27:57.369 It merely means that each child 27:57.380 --> 27:59.140 runs a one in four chance. 28:00.140 --> 28:02.949 Uh We feel that you 28:02.959 --> 28:05.589 Mr Rutherford have half of your reproductive 28:05.599 --> 28:08.109 cells carry the cystic fibrosis gene 28:08.510 --> 28:09.780 and you Mrs Rutherford, 28:09.790 --> 28:12.599 half of your reproductive cells carry the cystic 28:12.609 --> 28:13.660 fibrosis gene. 28:14.650 --> 28:17.349 So it's a 50 50 chance 28:17.449 --> 28:20.160 that the child will receive the abnormal gene from 28:20.170 --> 28:20.540 you. 28:21.430 --> 28:24.410 A 50 50 chance that it will also receive 28:24.420 --> 28:27.250 or will receive the abnormal gene from you Mrs Rutherford. 28:27.910 --> 28:30.819 So the overall chance turns out to be one in 28:30.829 --> 28:32.959 four or 25%. 28:33.729 --> 28:36.300 So if you have another 28:36.310 --> 28:36.890 child, 28:36.900 --> 28:38.260 that child will run 28:39.810 --> 28:41.420 25% risk. 28:41.790 --> 28:44.689 This is the same as if each of you were to toss a 28:44.699 --> 28:47.479 penny out on the top of the table 28:48.010 --> 28:50.829 and the odds that both pennies would come up 28:50.839 --> 28:53.770 tails would be 25% 28:53.780 --> 28:54.859 or one in four. 28:55.900 --> 28:56.750 If you like, 28:56.760 --> 28:59.489 you can look at it as being similar 28:59.500 --> 29:02.420 to using a deck of cards, 29:02.430 --> 29:05.420 shuffling a fresh deck of cars and reaching in and 29:05.430 --> 29:06.939 drawing out one car, 29:07.329 --> 29:10.250 your chance of getting a spade would 29:10.260 --> 29:11.339 be one in four. 29:12.530 --> 29:13.140 Now, 29:13.319 --> 29:14.030 as you know, 29:14.040 --> 29:15.459 in playing cards, 29:15.469 --> 29:18.160 you could draw three cards in a row and they might 29:18.329 --> 29:21.170 all be spades or you could draw three 29:21.180 --> 29:24.000 cards in a row and none of them might 29:24.010 --> 29:25.010 be spades. 29:25.089 --> 29:25.709 Actually, 29:25.719 --> 29:28.660 the deck of cards might need to be reshuffled again after each 29:28.670 --> 29:29.219 drawing. 29:29.229 --> 29:31.380 But that's a rough analogy. 29:34.219 --> 29:34.900 Now, 29:35.130 --> 29:37.650 you shouldn't feel that you have any more bad 29:37.660 --> 29:39.069 genes than the rest of us. 29:40.199 --> 29:42.989 We now feel that the average person 29:43.000 --> 29:45.390 carries about four or five 29:46.170 --> 29:49.010 abnormal genes of this recessive 29:49.020 --> 29:49.609 group. 29:50.890 --> 29:53.550 You carry the gene for cystic fibrosis. 29:53.560 --> 29:55.500 I may carry the gene for a disease. 29:55.510 --> 29:58.239 We call FEIN or PKU, 29:58.630 --> 30:00.760 someone else will carry another gene. 30:01.459 --> 30:02.219 But in essence, 30:02.229 --> 30:05.189 each one of us carries about four or five abnormal 30:05.199 --> 30:05.959 genes. 30:05.969 --> 30:06.750 And, 30:06.760 --> 30:06.770 uh, 30:07.359 --> 30:10.310 I think this can be interpreted to mean that you really 30:10.319 --> 30:13.199 are not carrying any more abnormal genes than the 30:13.209 --> 30:14.010 average person. 30:14.020 --> 30:16.680 And you shouldn't feel that you somehow 30:16.689 --> 30:19.410 have become tainted or 30:19.680 --> 30:22.530 carrying more of a burden than this than other people. 30:23.109 --> 30:23.310 The, 30:23.319 --> 30:24.949 the real thing then is, 30:24.959 --> 30:27.800 is just that Lewis and I 30:27.810 --> 30:30.130 both happen to be carriers 30:30.910 --> 30:32.550 and if, 30:33.530 --> 30:34.099 if, 30:34.109 --> 30:36.170 if either one of us weren't a carrier, 30:36.180 --> 30:38.099 then we wouldn't have this problem. 30:40.229 --> 30:43.229 The reason why more of 30:43.239 --> 30:45.869 our Children aren't affected with these recessive diseases 30:46.369 --> 30:49.290 is that usually the husband and 30:49.300 --> 30:52.260 wife do not match up for the same abnormal gene. 30:53.449 --> 30:53.540 Well, 30:53.550 --> 30:56.250 this one for risk is rather high 30:56.280 --> 30:57.780 and genetic counseling, 30:57.790 --> 30:59.729 we would call that a rather high risk. 31:00.050 --> 31:02.609 We feel the average couple runs about a 2% 31:02.619 --> 31:05.489 chance of having a child with a serious disease 31:05.989 --> 31:08.069 and a 25% chance is 31:08.079 --> 31:11.079 considerably higher than that 31:11.089 --> 31:13.810 for having the average couple having a child with a 31:13.819 --> 31:16.069 birth defect or a genetic problem. 31:16.400 --> 31:19.290 And you may wish to take this into consideration in 31:19.300 --> 31:19.989 your family. 31:20.000 --> 31:20.709 Planning. 31:22.520 --> 31:22.750 Now, 31:22.760 --> 31:25.569 you can look at this from the more optimistic point of view, 31:25.579 --> 31:28.040 the chance that your next child will not have cystic 31:28.050 --> 31:30.969 fibrosis is 75%. 31:31.869 --> 31:33.239 It's very important though, 31:33.250 --> 31:36.180 for you to realize that this disease does not just 31:36.699 --> 31:39.540 manifest itself as pneumonia in the 31:39.550 --> 31:40.959 first month of life. 31:40.969 --> 31:43.079 Cystic fibrosis can go on 31:43.660 --> 31:46.319 giving repeated attacks of pneumonia 31:46.329 --> 31:47.640 throughout life. 31:47.969 --> 31:49.079 And if Chris, 31:50.140 --> 31:50.770 if Chris, 31:50.780 --> 31:53.760 his life is lost during this stay in the intensive 31:53.770 --> 31:54.760 care nursery, 31:55.329 --> 31:57.989 you should realize that the usual 31:58.369 --> 32:01.000 way in which Children have cystic fibrosis 32:01.010 --> 32:03.619 is to live beyond one month of age, 32:03.630 --> 32:06.180 perhaps up into teenage 32:06.449 --> 32:08.339 or being even a young adult. 32:08.619 --> 32:11.410 But at the expense of repeated trips to the 32:11.420 --> 32:14.380 hospital and to the doctor's office and 32:14.390 --> 32:17.020 very diligent care and medical 32:17.030 --> 32:17.790 support. 32:18.020 --> 32:20.599 So it's a very expensive disease and I think you 32:20.609 --> 32:23.609 need to think of that also and planning to 32:23.619 --> 32:24.650 have other Children. 32:25.729 --> 32:28.030 Uh You have several options. 32:28.290 --> 32:31.189 One is to avoid having any 32:31.199 --> 32:32.180 more Children, 32:32.369 --> 32:35.239 including one of you 32:35.250 --> 32:36.729 having yourself sterilized. 32:37.520 --> 32:40.369 I do not recommend that for a couple who 32:40.380 --> 32:42.449 has a child with cystic fibrosis, 32:44.770 --> 32:47.140 we have the feeling that with cystic 32:47.150 --> 32:48.339 fibrosis, 32:48.400 --> 32:50.989 sickle cell disease and certain other 32:51.000 --> 32:53.709 hereditary diseases that a technique will 32:53.719 --> 32:54.859 become available. 32:55.949 --> 32:58.859 Quite likely in the next 4 to 5 years. 32:59.270 --> 33:00.219 And let's see, 33:00.229 --> 33:01.599 you're 23 years old. 33:01.609 --> 33:02.160 Now, 33:02.280 --> 33:03.500 Mrs Rutherford, 33:04.140 --> 33:07.020 I think it's quite likely that within 4 to 5 33:07.030 --> 33:07.540 years, 33:07.550 --> 33:10.459 we will have a way of telling a 33:10.469 --> 33:11.920 woman who is pregnant, 33:12.270 --> 33:14.920 whether or not her fetus has cystic 33:14.930 --> 33:15.900 fibrosis. 33:16.430 --> 33:19.349 This would allow a couple another option 33:19.560 --> 33:21.640 that is going ahead and getting pregnant. 33:22.260 --> 33:25.030 Seeing if the fetus has cystic fibrosis. 33:25.140 --> 33:25.979 If it does, 33:25.989 --> 33:28.310 you could request a therapeutic abortion. 33:29.180 --> 33:30.630 If the fetus does not, 33:30.640 --> 33:33.589 you could go through the remainder of the pregnancy without worrying about 33:33.599 --> 33:33.780 this. 33:33.790 --> 33:36.719 But bear in mind that that isn't possible at 33:36.729 --> 33:37.790 the present time. 33:38.630 --> 33:39.630 But we don't, 33:39.790 --> 33:42.569 we don't need to give up the idea of having more 33:42.579 --> 33:43.099 Children. 33:43.109 --> 33:43.540 I mean, 33:43.550 --> 33:44.880 for us, 33:44.890 --> 33:47.040 we've talked about this already and the 33:47.050 --> 33:49.819 25% just 33:49.829 --> 33:51.300 seems too terrible, 33:51.410 --> 33:53.800 especially if the, 33:54.150 --> 33:57.109 if the child will live to be 33:57.119 --> 33:58.449 12 or 13. 33:58.459 --> 34:00.699 And we just sort of 34:01.530 --> 34:02.189 said, 34:02.199 --> 34:02.439 well, 34:02.449 --> 34:03.170 no more, 34:03.209 --> 34:04.260 no more Children. 34:04.270 --> 34:04.739 But, 34:05.030 --> 34:07.189 but what you said is not, 34:07.199 --> 34:10.159 it gives us maybe a chance of 34:10.169 --> 34:11.100 later on. 34:11.199 --> 34:14.030 And it's wise to remember that it's difficult to find 34:14.040 --> 34:16.850 babies for adoption now they're harder and harder to come 34:16.860 --> 34:17.179 by. 34:17.189 --> 34:19.379 So I wouldn't just assume that that that's a 34:19.389 --> 34:20.360 possibility. 34:20.629 --> 34:21.600 Well, 34:22.199 --> 34:25.060 I will be writing a letter summarizing these points 34:25.070 --> 34:25.780 to you. 34:26.360 --> 34:29.320 I should mention that no one else in the family is 34:29.330 --> 34:29.820 at risk, 34:29.830 --> 34:32.340 particularly for having an affected child. 34:32.350 --> 34:33.449 I wouldn't think that Joe, 34:33.459 --> 34:34.169 for instance, 34:34.179 --> 34:35.719 would have cystic fibrosis. 34:35.939 --> 34:38.389 It's possible but it's very remote. 34:38.919 --> 34:38.929 Uh, 34:38.939 --> 34:41.750 the main member of your family 34:41.760 --> 34:44.729 who is liable to have cystic fibrosis would be 34:44.739 --> 34:45.840 your future Children. 34:46.629 --> 34:47.300 Chris', 34:47.310 --> 34:50.110 future brothers and sisters and I'll be writing a 34:50.120 --> 34:52.989 letter summarizing all of these points to you 34:53.340 --> 34:55.270 and we'll send a copy of that 34:56.320 --> 34:57.800 to Dr Andrews. 34:59.379 --> 34:59.639 Well, 34:59.649 --> 35:00.590 thank you very much. 35:00.699 --> 35:00.979 Thank you. 35:02.290 --> 35:03.159 Enjoy meeting here. 35:16.689 --> 35:17.120 Hi. 35:17.229 --> 35:17.860 Hi. 35:18.149 --> 35:18.169 Um, 35:18.570 --> 35:20.659 doctor asked me to come in 35:21.080 --> 35:21.659 and, 35:21.669 --> 35:21.760 um, 35:21.770 --> 35:23.860 make sure that I have your address. 35:23.870 --> 35:24.270 Right. 35:24.280 --> 35:24.459 And, 35:24.469 --> 35:26.520 and I think we have Doctor Andrews address. 35:26.530 --> 35:26.840 He, 35:26.850 --> 35:29.810 he corresponded with us and the way I 35:29.820 --> 35:31.379 have it on your address, 35:31.389 --> 35:31.679 it's, 35:31.689 --> 35:31.699 uh, 35:31.709 --> 35:34.129 on a drive in Wilmington North. 35:35.229 --> 35:35.689 Ok. 35:35.699 --> 35:36.120 Well, 35:36.129 --> 35:37.020 as he mentioned, 35:37.030 --> 35:39.399 he will be sending a summary report to you. 35:39.495 --> 35:39.715 Mhm. 35:40.435 --> 35:41.975 And if it's ok with you, 35:41.985 --> 35:43.395 we'll send one to your, 35:43.455 --> 35:46.135 your referring physician or your family physician. 35:46.405 --> 35:47.004 Um, 35:47.334 --> 35:48.625 Doctor Andrews. 35:49.314 --> 35:49.885 Um, 35:50.074 --> 35:51.885 probably within a year, 35:51.895 --> 35:52.885 more or less, 35:52.895 --> 35:55.875 someone may be coming around to speak to you either by 35:55.885 --> 35:58.834 phone or a visit or a letter in the 35:58.844 --> 36:01.465 mail asking some personal questions to 36:01.475 --> 36:04.135 see if you have any 36:04.145 --> 36:05.344 problems. 36:05.354 --> 36:05.965 Um, 36:05.975 --> 36:08.294 what decisions you've made as a result of the 36:08.304 --> 36:09.044 counseling. 36:09.610 --> 36:12.100 And also to see if there's still some questions you might 36:12.110 --> 36:15.080 have in regards to the discussion here 36:16.000 --> 36:18.219 and if we have more questions we can 36:18.540 --> 36:20.310 write or call. 36:21.020 --> 36:21.030 Oh, 36:21.040 --> 36:21.679 certainly, 36:21.689 --> 36:22.060 please. 36:22.070 --> 36:22.149 Do. 36:22.159 --> 36:22.389 Do, 36:22.399 --> 36:25.370 do you feel like you had a chance now to discuss 36:25.639 --> 36:27.639 most of the questions that you did have? 36:27.750 --> 36:29.530 Still sort of complicated? 36:29.540 --> 36:30.949 It's complicated. 36:31.340 --> 36:33.840 But I think we know certainly more we 36:34.090 --> 36:36.229 start making some concrete decisions. 36:36.239 --> 36:38.570 You feel easier now that you have talked with. 36:39.989 --> 36:40.000 Oh, 36:40.020 --> 36:40.300 well, 36:40.310 --> 36:40.979 that's good. 36:40.989 --> 36:43.909 And probably any other questions that you do have 36:44.330 --> 36:46.270 the letter may help to clarify it. 36:46.280 --> 36:47.290 If you have more questions, 36:47.300 --> 36:50.139 perhaps you can discuss it with Doctor Andrews 36:50.239 --> 36:52.429 and if you're still satisfied, 36:52.439 --> 36:55.250 give us a call or write us a note and I'm 36:55.260 --> 36:58.250 certain doctor K will be glad to speak to you again 36:58.459 --> 37:00.419 and answer any questions you have. 37:00.760 --> 37:00.800 Ok. 37:01.669 --> 37:04.300 Uh What do you feel that the risk for the next 37:04.310 --> 37:07.310 child will be well for 37:07.320 --> 37:08.459 the next child? 37:08.469 --> 37:09.159 Um, 37:09.629 --> 37:11.100 25%. 37:11.110 --> 37:11.419 Yeah. 37:11.429 --> 37:13.120 What about future Children? 37:13.129 --> 37:13.629 Do you? 37:14.179 --> 37:15.100 Well, 37:15.610 --> 37:15.620 I, 37:15.629 --> 37:17.899 I don't understand. 37:17.909 --> 37:18.500 I, 37:18.510 --> 37:21.500 I think it depends on whether or not 37:21.790 --> 37:24.439 the next child is sick or 37:24.449 --> 37:27.129 not and if you 37:27.139 --> 37:27.679 have, 37:27.790 --> 37:28.949 if it's sick, 37:28.959 --> 37:30.909 then I think the one after that won't, 37:30.919 --> 37:31.449 won't be, 37:31.459 --> 37:32.120 well, 37:32.520 --> 37:33.030 in other words, 37:33.040 --> 37:33.739 if you do have the, 37:33.750 --> 37:35.209 if your next child is affected, 37:35.219 --> 37:37.649 you feel you the next one will be 37:37.659 --> 37:38.310 ok. 37:38.969 --> 37:39.149 Yeah. 37:39.159 --> 37:39.780 Well, 37:40.219 --> 37:43.060 I think Doctor Kin would probably say 37:43.070 --> 37:45.739 that you have the same chance with each child, 37:45.750 --> 37:46.659 with each future. 37:47.199 --> 37:47.929 Right? 37:47.939 --> 37:48.320 I mean, 37:48.330 --> 37:48.659 it's, 37:48.669 --> 37:49.379 it's not, 37:49.959 --> 37:50.500 um, 37:52.139 --> 37:54.800 but I think the letter may help clarify that but I 37:54.810 --> 37:57.250 think you could assume that for each 37:57.260 --> 37:59.830 child that comes along you have exactly the same 37:59.840 --> 38:00.520 chance. 38:02.469 --> 38:03.370 So on. 38:04.570 --> 38:04.879 Well, 38:04.889 --> 38:06.280 are you going to drive back? 38:06.290 --> 38:06.500 No, 38:06.510 --> 38:06.929 that's right. 38:06.939 --> 38:07.820 You're gonna stay in chat, 38:08.909 --> 38:08.939 right. 38:09.350 --> 38:09.659 So, 38:09.679 --> 38:11.199 at least you don't have a long drive back. 38:13.129 --> 38:13.500 Ok. 38:13.510 --> 38:13.729 Well, 38:13.739 --> 38:14.540 I hope all goes. 38:14.550 --> 38:14.919 Well, 38:15.070 --> 38:15.139 ok, 38:15.439 --> 38:16.010 thank you very much. 38:16.110 --> 38:19.110 Glad you came here to talk with us and any other questions you 38:19.120 --> 38:20.520 might have just let us know? 38:20.570 --> 38:21.020 Ok, 38:21.110 --> 38:21.600 thank you. 38:21.820 --> 38:23.280 Good bye bye bye.