Facebook Live: Pediatric Pulmonary Hypertension
Facebook Live: Pediatric Pulmonary Hypertension
In this continuing education series, the heart and lung community from St. Louis Children’s Hospital aims to raise awareness of Pulmonary Hypertension in kids. Learn more about the symptoms, diagnosis \u0026 treatment of pediatric Pulmonary Hypertension.
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Content
0.03 -> Hi everyone! My name is Jennifer Hinkle
2.19 -> and I'm a heart mom here in St. Louis. My
4.799 -> husband and I started the Ollie Hinkle
6.27 -> Heart Foundation five years ago in honor
8.55 -> of our son, Ollie.
9.809 -> The Ollie Hinkle Heart Foundation is
12.21 -> dedicated to lessening the impact of CHD
14.7 -> through love, awareness, and the
16.92 -> advancement of congenital heart disease
18.75 -> diagnosis and treatment. Recently we
21.72 -> sponsored the A Dose of Magic event and
23.88 -> are excited to help bring a continuing
25.98 -> education series through Facebook live
28.349 -> discussions. Today we'll be discussing
30.72 -> the topic of pulmonary hypertension with
33.63 -> Dr. Mark Grady and Jessica York. Dr.
36.39 -> Grady is a cardiologist and pulmonary
38.79 -> hypertension specialist here at St.
41.37 -> Louis Children's Hospital. Jessica is
44.01 -> a pulmonary hypertension mom and
45.899 -> advocate. Thank you both for being here
48.12 -> today. Thanks for having us. One last note
50.73 -> before we begin, we'll be giving prizes
53.129 -> away to the first three people who
54.87 -> submit questions during this discussion—
56.67 -> all you have to do is be one of the
58.559 -> first three viewers to submit a question
60.27 -> and you can win some awesome prizes from
62.82 -> The Heart Center and the Olli Hinkle Heart
64.5 -> Foundation.
65.27 -> To begin, Dr. Grady, can you help
68.46 -> explain what pulmonary hypertension is?
70.85 -> Sure it's a disease of the lungs that
74.22 -> makes it difficult for the blood to get
77.009 -> through them. That's a pretty simple
79.14 -> explanation. There's lots of different
80.64 -> reasons why that may be the case but
82.71 -> essentially it's a problem with the
85.11 -> lungs getting, I mean a problem with
87.09 -> the blood getting from from the heart
89.88 -> through the lungs to the other side of the
92.579 -> heart. Okay. Jessica, I read about your
96.78 -> daughter, Haley’s story on The Heart
99.06 -> Center’s Facebook page. Can you tell us a
101.07 -> little bit about her and her diagnosis?
102.96 -> Sure, Haley is the youngest of our two
105.81 -> daughters. She's five and she has a
107.579 -> sister Jordan who's 15. For the first few
111.149 -> years of life, Haley met all her
112.92 -> milestones at a steady pace and as her
116.52 -> sister had years before. She developed a
120.479 -> magnetic personality always smiling,
123.96 -> making jokes, and doing pranks to make
126.24 -> people laugh. At our three-year-old
128.64 -> checkup which was delayed, so we had it in
131.069 -> October of 2016
133.39 -> her birthdays in July, was when her
136.63 -> heart murmur was heard for the first
138.19 -> time. Her doctor had decided that
141.1 -> we would wait a month to see if the murmur was
143.319 -> still present. If it was, then we would go
145.54 -> ahead and schedule an echo. During
148.27 -> that time my dad had become paralyzed.
150.31 -> Six months prior, she'd been going to
153.04 -> weekly appointments with him to a wound
155.38 -> care specialist. That office actually
157.45 -> noticed that she had purple lips, purple
160.69 -> fingernails, and seemed really short of
163.209 -> breath so they urged us to call her
165.489 -> doctor, which we did. They immediately
168.1 -> scheduled the echo which was when
171.13 -> they discovered she has a complete AV
173.38 -> canal heart defect also with pulmonary
175.84 -> hypertension. Dr. Grady, as you know
180.28 -> Jessica is a big PH advocate and she's
183.79 -> pulled together some questions from the
186.43 -> PH community for today's discussion. What
191.11 -> signs are important to look for to rule
193.18 -> PH out or get earlier diagnosis of
196.81 -> pulmonary hypertension? That's a good
201.4 -> question! I think sometimes the diagnosis
203.65 -> can be delayed as in Haley's case for a
207.97 -> number of years when it's thought to be
209.5 -> perhaps something else. It's
212.17 -> a rare diagnosis and so as a
214.09 -> pediatrician you have to have
216.73 -> that in the back of your mind as a
218.44 -> possibility like lots of rare
220.69 -> things that happen in kids, but in
224.29 -> general if a child's got significant
226.209 -> pulmonary hypertension, at some point they
227.89 -> become a little bit less active. They're
229.48 -> not as playful or as energetic as they
231.489 -> used to be. Sometimes it can mask as
233.739 -> asthma. I've seen situations where
236.35 -> children are diagnosed with asthma for
238.329 -> several years. It doesn't seem to be
239.709 -> getting better despite a lot of
240.88 -> treatments and they come to discover
242.98 -> that it's actually pulmonary hypertension.
245.43 -> Anytime a child
249.12 -> faints for no good reason,
252.67 -> that sometimes can be a sign of pulmonary
255.579 -> hypertension. Now, lots of kids faint, so I
257.229 -> don't want everyone
257.87 -> to panic, but if it's something that
260.329 -> happens repeatedly that would be another
261.889 -> sign. How can we help educate
265.33 -> pediatricians and nursing staff on local
267.86 -> levels about early diagnosis and taking
271.01 -> the observations of parents seriously?
274.24 -> Well again, I think situations like
277.699 -> what we're doing right now just
279.889 -> increases the awareness of pulmonary
281.449 -> hypertension as a diagnosis. I've
283.729 -> been involved with it for the last ten
285.41 -> years and I can say that the number of
287.81 -> kids that we’re diagnosing with it
289.639 -> seems like it continues to go up each
291.77 -> year. I think just having that in
295.94 -> the back of your mind as a general
297.26 -> pediatrician is hard because they have
298.58 -> to have lots of things in the back of
299.87 -> their mind, but again just letting people
303.38 -> know that that's always in the
304.61 -> differential. What kind of challenges
308.419 -> are presented when trying to treat a
310.34 -> child with pulmonary hypertension with
313.039 -> medications that are not yet approved by
315.41 -> the FDA? Well that's a problem that's
318.949 -> true in a lot of pediatrics.
321.61 -> As a pediatric cardiologist, we do a lot
324.47 -> of things other—I do—other than treat
326.36 -> pulmonary hypertension and a lot of it
328.07 -> involves medicines and that aren't
330.47 -> necessarily approved for children. We
333.08 -> struggle with this all the time. Drug
334.97 -> companies just aren't as interested in
336.53 -> developing that specifically for
338.21 -> children, so we have to borrow from
340.82 -> the adult world. A lot of times that
343.43 -> works out okay. We just give the kids
345.2 -> maybe a little bit less of a dose than
346.97 -> we do the adults, but sometimes we're not
350.9 -> sure what the effects will be on a
353.75 -> growing child. Sometimes the studies
355.55 -> aren't there and we just have to
357.199 -> take our best guess with it. It can be
359.18 -> problematic especially in the PH world.
362.51 -> These medicines are rare or expensive.
366.289 -> To be really effective there are
369.53 -> some that you can take by mouth, but
371.599 -> there are some that really require more
374.15 -> invasive delivery like an IV that
377.389 -> has a pump much like Haley has been
379.16 -> wearing for the last several years that
381.07 -> provides that medicine 24/7.
383.78 -> Obviously, that's a big challenge for an
386.69 -> energetic three or four year old to keep
389 -> that going.
390.31 -> Right? Yeah. Does Haley have any
393.56 -> limitations from her pulmonary
395.96 -> hypertension? Yeah, she definitely does. I
398.15 -> mean Haley pushes herself very well but
401.51 -> she has limitations like climbing the
404.12 -> stairs. If she climbs stairs, she gets out
406.16 -> of breath after three stairs. We had
408.23 -> to get a stair lift put in our home just
410.27 -> for her to get upstairs to her room. She
413.27 -> has to use a wheelchair when walking
415.76 -> long distances always, but even sometimes
418.669 -> short distances if she's having a bad PH
421.07 -> day. That can be a problem. She also has
425.27 -> the Broviac in which she has to wear a
427.91 -> backpack 24/7 to pump medication through
431.69 -> so she can't be submerged in the water.
434.14 -> Bath time requires shower guards.
437.419 -> If she swims, she has to wear a special
439.58 -> dry suit for that. There are
442.4 -> definitely limitations. Then, she's
444.2 -> getting ready to go into kindergarten so
445.94 -> that's a whole process because right now
447.71 -> she goes to preschool just twice a week,
449.74 -> three hour days and I mean that makes
452.63 -> her exhausted. The fatigue is
455 -> another big limitation for her as well.
457.46 -> Mm-hmm. Dr. Grady, are there any new
464.03 -> potential treatments on the horizon that
465.83 -> you're excited about? Well again, we have
470.87 -> to rely on some of the adult
472.55 -> studies for our medications. I don't know
476.66 -> that there's anything pill wise that
479.09 -> is really going to be
483.2 -> effective in the pediatric world. There
485.12 -> are some devices that might be of
489.35 -> interest. I know Haley has to
491.33 -> have a backpack where her pump is
493.72 -> continually providing her with her
496.16 -> medicine through a central line. In the
499.7 -> adult world, now they've started to take
501.229 -> those pumps and actually implant them
502.94 -> under the skin, so now you don't have
504.71 -> a backpack anymore. Again that's just
508.19 -> getting under way in the adult
511.28 -> world and whether something like that
512.51 -> will be applicable to children, that
514.039 -> would be exciting. Yeah, I was
518.06 -> going to ask. Jessica,
519.919 -> can you tell us a little bit about
521.24 -> Haley's medications
522.38 -> and the process you and your husband
524.93 -> carry out to prepare these medications?
526.67 -> Sure two of our medications we
530.21 -> have to order from a specialty pharmacy
531.92 -> which that in itself takes about a 30
534.86 -> minute phone call every month to do.
538.61 -> Then you have to sign for the package
540.08 -> because they're very expensive.
542.84 -> Then her modulin—she used to
546.35 -> be on Flolans—you had to mix that
547.82 -> every single day.
548.93 -> There are modulins that you have to mix.
552.02 -> They actually have a module diluent
554.27 -> now so we can premix it for like
557.48 -> seven doses. You switch the cassette out
560.57 -> though every other day so we have to do
563.63 -> that, as well as her bandage changes we
565.7 -> do once a week. Change those out. Then
568.43 -> she's on oral medications which she takes
570.71 -> 2 at 6 a.m., one at 2 p.m., one at 6 p.m.
575.09 -> and then one at 9:00 p.m. Those are
578.51 -> her daily meds. Speaking of
581.09 -> medications, Dr. Grady, to your knowledge, do
584.75 -> any of the medications or pulmonary
588.11 -> hypertension itself cause problems with
590.06 -> schoolwork like attention, focus, and learning?
593.95 -> It's a good question. I would just
597.2 -> preface it by saying miss York does a
599.06 -> fabulous job in managing what really for
602.54 -> a lot of people is almost inconceivable.
604.31 -> It's almost like
606.02 -> having your own intensive care unit at
607.7 -> home. She's awesome at it. Thank you! I appreciate that. Haley has done
611.99 -> as well as she has because of the dedication of
614.18 -> mom and dad here. In terms of how
617.87 -> it affects people at home, I mean at
620.12 -> school,
620.83 -> I'm not aware that they have direct, I have
624.53 -> not seeing that as a common problem. I
626.84 -> think they all have side effects.
628.43 -> They can cause headaches, GI stomach
630.59 -> upset, and things that may affect their
632.57 -> performance in school or fatigue and
634.52 -> things of that nature. We had a few
640.76 -> questions about the surgical procedure
643.67 -> Potts Shunt. Dr. Grady what is Potts Shunt
647.9 -> and who is considered the ideal
649.58 -> candidate for this procedure? Right so
652.67 -> earlier you were asking me if there’s
653.99 -> something new that's
655.309 -> coming out that may be of benefit to
658.439 -> kids with hypertension. I would say
660.72 -> this this surgical technique called the
663.269 -> Potts Shunt, named after the surgeon
665.249 -> who developed it back in the 1940s, was for
668.459 -> treating a different kind of congenital
670.259 -> heart disease. The utilization of
674.009 -> this Potts Shunt in the last five to ten
676.709 -> years has—I think—made a real difference
678.329 -> in some children's lives with pulmonary
680.549 -> hypertension. Essentially it's a
684.299 -> connection between the right side of
686.279 -> the heart and the left side of the heart.
687.779 -> Instead of the the right side of the
690.929 -> heart which has got to push all that
692.16 -> blood through the lungs which it has
694.199 -> trouble doing, you make this connection
696.48 -> to give the heart a
698.639 -> back door where some of the blood can
700.559 -> escape. Perhaps that pressure drops a
703.199 -> little bit inside the heart, so it's
704.939 -> not under so much tension. By
707.79 -> doing that, you preserve the heart
709.499 -> function longer, the kid feels a little
711.119 -> bit better, they're a little bit bluer
712.619 -> because of it but their heart is a little
714.569 -> happier. It's a technique that was
717.619 -> first developed and used a lot in
721.379 -> France. We've now just done our
724.86 -> sixteenth child with a Potts Shunt which
726.899 -> is probably more than any other center
728.699 -> in the United States anyway.
730.519 -> I’ve seen where it makes a huge
732.54 -> difference in a child's life and how
734.069 -> they feel. Are there any reasons that
737.97 -> would exclude a child from being a good
739.949 -> candidate? Well, yeah. It's a
743.85 -> careful selection process. It's certainly
745.529 -> not going to be for everyone. For
748.259 -> Haley’s pulmonary hypertension, it
750.72 -> would not be an effective treatment for
752.819 -> her because she's already got a hole in
754.529 -> her heart that allows
756.48 -> some of the blood to escape
759.299 -> through it, but generally if a child has
762.389 -> really very high pressure on the right
764.309 -> side of their heart then they would
765.749 -> potentially be a candidate for a Potts
767.999 -> Shunt. Okay. Are there any benefits of the Potts
774.629 -> Shunt being done before
776.029 -> remodulin being started or before
779.16 -> there is any heart RV damage? That's a
784.769 -> tricky question.
787.54 -> Remodulin is one of several medicines
792.02 -> that are called prostacyclins. They
794.99 -> are considered by most people in the PH
797.39 -> world to be the most effective medicine
799.31 -> that we have to treat pulmonary
800.81 -> hypertension. The downside is how they
803.99 -> have to be delivered. Much like in Haley
805.64 -> situation, it has to have to place for a
807.77 -> central line or it's given under the
809.51 -> skin, but you have a pump. You're
811.37 -> given it 24/7 and as Ms. York can
813.77 -> testify that that's a huge change in
816.65 -> your life and the quality of life
819.05 -> of the child. Most people
822.56 -> would feel like any child with
824.15 -> significant pulmonary hypertension for the
826.07 -> most part probably deserves, if it's
827.839 -> really severe, a trial of the prostacyclin.
830.029 -> Where does the Potts Shunt
833.33 -> fit into that? I think
836 -> that's a work in progress to be honest.
837.71 -> We've had several children, one in
841.4 -> particular that had severe autism, and
843.47 -> there was no way that he was going to
844.94 -> allow us to put in a line and he was not
847.37 -> going to keep it in place; as a
849.77 -> consequence, we elected to do a Potts Shunt
852.32 -> without trying the prostacyclin and he's
854.96 -> done great, but in general we probably
856.67 -> would give a go at the medicine before
858.44 -> jumping to a Potts Shunt. Now how long you
861.17 -> would try it, that's a that's an open
863.15 -> question. Okay. Then, another
867.08 -> question is can someone grow out of
868.73 -> pulmonary hypertension or be cured of it?
872.08 -> Well, there's lots of different
874.28 -> reasons why someone might have pulmonary
876.589 -> hypertension. Some can be very
878.089 -> straightforward like you have a thyroid
879.71 -> disorder that can cause pulmonary
881.15 -> hypertension so if you cure the thyroid
883.79 -> problem the pulmonary hypertension goes away.
887.02 -> Unfortunately for lots of people that
888.8 -> develop pulmonary hypertension, we don't
890.839 -> really know the cause of it. Those
893.089 -> are much more difficult to predict. In
896.9 -> general, in children, I'm much more
899 -> optimistic if a young child or an infant
901.25 -> develops pulmonary hypertension than if it's
903.5 -> a it's a teenager. An infant still has
906.95 -> 5 or 6 years of growth ahead of it
909.95 -> where the lung can develop new lung
911.63 -> tissue. I always feel like if you can
914.39 -> develop new lung tissue, there's always a
916.04 -> good chance that could be good lung
917.48 -> tissue and that may be your pulmonary
919.01 -> hypertension
919.37 -> and will improve with time. Okay.
923.05 -> Jessica, you've been such an advocate of
925.55 -> the pulmonary hypertension community. Why
928.339 -> is it important for you to be so active
930.44 -> and spread the word about PH? I think
933.71 -> it's really important because PH is rare
936.529 -> but it's also considered an invisible
939.74 -> disease. I think everyone knows what
943.46 -> a lot of illnesses are like
945.05 -> diabetes and things like that, but when
947.69 -> you say PH people have no idea what that
949.94 -> is. It's hard for people to look at Haley
954.5 -> and see this happy, smiling,
957.83 -> active child and wrap around their head
961.07 -> that she has a terminal illness, so I
964.55 -> think it's important to change the
966.2 -> vision of what everyone thinks a
969.08 -> terminal illness is supposed to look
970.82 -> like and that it doesn't necessarily have to
973.76 -> look like that. It can be something like
975.5 -> PH. Then, I would just really like to see
979.7 -> PH be ruled out instead of ruled in so
983.69 -> we can get earlier diagnosis.
986.75 -> Maybe if we caught Haley's earlier,
989 -> the situation would be a lot
990.92 -> different. I think it's just important
993.08 -> to get the word out so people know what
994.88 -> it is and really make them
997.67 -> aware. Mm-hmm. What kind of support have
1001.209 -> you and your family received from others
1002.98 -> going through a PH diagnosis? I think
1006.91 -> our support stems from what
1009.279 -> Haley has been able to give to the PH
1011.14 -> community. When I looked at
1014.8 -> Haley when she was 2 weeks old, I just
1016.42 -> thought there's something special about
1018.4 -> her. She's going to have a big purpose in
1020.26 -> life
1020.74 -> and I think now her purpose is clear.
1023.29 -> We've had people reach out
1025.66 -> to us telling us that seeing Haley
1028.3 -> smile gives them inspiration to keep
1030.85 -> going and helps them get through their
1032.679 -> hard days which makes us feel better.
1035.14 -> I really feel like she's
1036.91 -> fulfilling her purpose here
1039.37 -> which is nice to do. Yeah. What kind of
1042.88 -> support have you been able to offer
1044.17 -> other families? Just really
1048.22 -> going to the events,
1051.34 -> reaching out to people on Facebook,
1053.02 -> answering questions, just trying to
1055.87 -> really do anything we can. We do an
1058.09 -> Easter exchange and Christmas exchanges
1060.64 -> with the PH community.
1063.64 -> Facebook makes it really easy to connect
1065.89 -> with everyone now. It's
1068.44 -> been really helpful. That's awesome!
1071.95 -> Well keep doing what you're doing for
1073.57 -> sure. Do we have any questions from our
1076.45 -> audience? Okay. Here’s a question coming in
1080.77 -> from Nicole Phillips, “There are PH
1083.05 -> support groups around the nation, but
1085.15 -> many are focused on adult patients where
1087.28 -> can pediatric patients turn for support?” That’s a good question.
1095.6 -> There are family support groups on Facebook, but I think
1098.8 -> that's why we're doing things like this
1100.15 -> to try to connect more PH families.
1103.09 -> I think when it comes to your child some
1105.58 -> people deal with PH differently than
1108.01 -> others but that's what we're hoping to
1111.4 -> do by doing things like this is to gain
1113.92 -> more support. I would add that there
1116.679 -> are some organizations that actually do
1120.34 -> cater to families with
1123.88 -> children with Pulmonary hypertension, in
1125.71 -> particular I think you're involved
1127.69 -> with the Pulmonary Hypertension
1128.95 -> Association. I think their website is pha.org.
1133.03 -> If you go there they have I
1135.76 -> think a lot of information for families
1138.67 -> with kids that have pulmonary hypertension
1140.32 -> Team Phenomenal Hope also has a
1143.17 -> support group,a call-in support group,
1145.36 -> and things that we've been doing as well.
1147.01 -> That's great information. Tanya
1150.19 -> Stark has a question. “Do most kids
1153.28 -> with PH also have CHD?” That's a good
1158.32 -> question from Ms. Stark, who I know well.
1162.72 -> It's actually becoming a bit more common
1166.21 -> to see Pulmonary hypertension associated
1168.429 -> with congenital heart disease especially
1170.35 -> as we've gotten more sophisticated in
1172.27 -> helping young children and babies with
1174.79 -> congenital heart disease. They're living
1176.5 -> longer and so now we're starting to see
1178.9 -> some of the secondary consequences of
1181.72 -> of that disease as they as they grow.
1186.49 -> By and large, it's probably a smaller
1188.679 -> subset of kids that have pulmonary hypertension.
1191.789 -> Haley is a little bit unusual
1194.83 -> in her presentation.
1199.32 -> Miranda Hughes asks, “My daughter was
1203.47 -> diagnosed with PH at three months old.
1205.59 -> She has a repaired repaired AV canal
1208.75 -> defect. I have been told her lungs will
1211.96 -> get stronger as she ages.
1213.58 -> She's now 18 months old with a trach and
1215.769 -> weaning from her vent. I have noticed how
1218.649 -> much more active and stronger she has
1220.72 -> become as we are weaning. How can we tell
1224.2 -> if she is really actually doing better
1226 -> from her PH?” Well first of all, the fact
1232.029 -> that she seems like she's doing better
1233.529 -> is a good sign. I think if her
1235.179 -> pulmonary hypertension was truly
1236.74 -> worsening she wouldn't be as active as
1238.74 -> she's describing there. I think that
1241.799 -> certainly the child's physician
1244.96 -> should be able to assess the pulmonary
1246.879 -> hypertension relatively easily through
1249.429 -> things such as echocardiograms.
1251.11 -> Occasionally if you need, to you do
1252.97 -> things like cardiac catheterizations.
1256.21 -> It should be fairly straightforward to
1258.009 -> get a good handle on how her
1260.019 -> pulmonary hypertension's evolving.
1261.669 -> It's a good sign that she's becoming
1263.23 -> more and more active. Again,
1264.539 -> the nice thing about little children is
1267.25 -> that they grow and they can actually get
1269.019 -> better. Okay, we have another question
1272.35 -> from Christine Car, “When is the Fun Walk
1276.1 -> and how do we sign up?” It's this year on
1279.61 -> May 5th which happens to be World PH Day.
1282.48 -> There are links on the PH Fun Walk for
1286.179 -> Hay page on Facebook as well as Pray for
1289.48 -> Hay on Facebook. It's going to be a great
1293.289 -> event. Hopefully, it's going to be
1295.12 -> annual. It's going to have a one-mile fun
1296.919 -> walk. We're going to have Louie from the
1299.2 -> St. Louis Blues there, Fredbird from the
1301.21 -> Cardinals, face painting, balloon animals, and
1304.72 -> airbrush tattoos. I just hope to get
1308.019 -> as many people out there as we can along with the
1310.539 -> PH patients, and raise some money.
1313.149 -> All the money is going to go to the
1314.559 -> PH Robin Bars Pediatric PH fund to help
1319.179 -> with research for a cure. It sounds like a great
1321.549 -> event. Yeah.
1323.279 -> Do we have any more questions from our
1325.929 -> audience? Okay. If we don't have any other
1329.95 -> questions, I'd like to thank Jessica and
1332.559 -> Dr. Grady for joining us today.
1334.62 -> Thank you all for tuning in and
1337.899 -> remember this discussion will be
1339.279 -> available in our video section shortly
1341.679 -> after we finish streaming. Always feel
1344.049 -> free to leave us a comment if you have a
1345.639 -> question or concern and someone from The
1347.95 -> Heart Center will get back with you.
1349.119 -> Thanks again! We will see you next time.
Source: https://www.youtube.com/watch?v=K-UaWVzEavI