Raising a Child with Heart Failure

Raising a Child with Heart Failure

Raising a Child with Heart Failure

A rare insight into parents’ experience of raising a child who has experienced heart failure and a patient’s hope for the future.

About these videos

The idea of heart failure in children is a difficult subject, but one that needs to be in the public consciousness. The purpose of these videos is to increase awareness of childhood heart disease and heart failure in children, shared through the eyes of the patient and their family members.

These personal stories highlight the lifelong impact these conditions have on patients and their families. It is our hope that these honest, engaging, relatable and hopeful videos will resonate with other patients and families going through their own journeys, whilst also stimulating discussion in the wider community.

Finally, the videos also touch on the hope offered by the research being performed at the Melbourne Children’s Campus, which has the potential to transform the lives of future children.

MCRI and HeartKids (https://www.heartkids.org.au/) would like to thank this incredible group of patients and parents for being so generous with your time in sharing these vital stories. A big thank you also to Justin Hutchinson and the team at LifeBuoy Video (https://lifebuoyvideo.com.au/videos/m…) for your help in producing these videos.

Click here to learn more about the MCRI Heart Failure Flagship: https://www.mcri.edu.au/research/stra…


Content

0 -> [Music]
16.56 -> just i guess on an emotional level
18.64 -> trying to explain to people that she
21.119 -> probably would need a heart transplant
23.76 -> which is sort of what we thought was
25.039 -> going to happen people can't really
27.359 -> understand that your little baby might
30.32 -> might not have a functioning heart not
32.559 -> something that i was aware happened to
34.559 -> children though we met quite a lot of
36.559 -> families in hospital who were all going
38.16 -> through the same thing so it's obviously
39.84 -> not as rare as i thought it was in the
41.36 -> beginning it is a definitely a difficult
43.52 -> thing to explain in a few words we've
45.52 -> been dealing with this for six years now
48.079 -> and the questions they don't ever really
50.48 -> end
51.36 -> but i'm happy to answer them because
54.719 -> the more people that know the better
56.8 -> a lot of the questions especially in the
58.32 -> beginning was
60 -> uh when will she get a new heart where
62.8 -> will it come from
64.4 -> how long will it be
65.92 -> i know the questions with elijah
68.4 -> uh will he need a heart transplant and
70.88 -> that's not a question that we can answer
72.56 -> because we just don't know i remember
74.88 -> saying to sam like what did they mean
77.2 -> it's her heart
78.96 -> and i think yeah we just went through
81.439 -> a lot of disbelief and then
83.759 -> kind of thinking that it was that it
86.159 -> couldn't possibly be that bad she was
88.4 -> diagnosed at two years old which was
90.64 -> about six years ago
92.479 -> with heart failure she ended up needing
94.479 -> to be listed for transplant a few months
96.159 -> after her diagnosis
98.56 -> iris uh was
100.479 -> just unwell one day um just with like
104.24 -> gastro sort of symptoms
106.799 -> up until then she'd seem completely fine
109.92 -> uh and that night we were just worried
112.72 -> that i was just worried that she
115.119 -> was getting dehydrated and she started
117.439 -> to look quite unwell so
120.399 -> we ended up deciding to take her to the
122.64 -> kids hospital to royal children's we got
125.28 -> taken up to the icu and told that there
129.039 -> was a problem with her heart
131.12 -> i mean we definitely went through it as
132.959 -> a team and we had the support of our
135.28 -> families which was amazing
137.52 -> and we needed that because our kids
139.84 -> obviously still had to our other two
141.76 -> kids still had to go to school and live
143.92 -> a normal life we talk about the future
146.48 -> about about having kids and
149.52 -> having to to go through ivf
152.48 -> so that our kids can be healthy
153.84 -> obviously i know that my condition is
155.84 -> hereditary having got it from my mum
159.04 -> and and i've done the genetic genetic
160.8 -> testing so i know the odds of of having
163.2 -> children with the same condition with
165.12 -> having heart failure
166.72 -> and when we're ready we'll we'll have
168.72 -> we'll have kids and we'll have healthy
170.56 -> kids
171.44 -> things that excite me about the future
173.44 -> are
174.56 -> watching the kids being able to grow up
177.04 -> because
178.08 -> they've been
179.36 -> especially millie has been given the
180.64 -> chance to
181.84 -> be able to grow up all the things that
184.239 -> make me excited also are the things that
186.08 -> make me scared because
188.17 -> [Music]
190.8 -> um
192 -> because we just don't know what's going
193.76 -> to happen
195.84 -> as far as the future is concerned i'm
197.2 -> probably most excited about being a
199.28 -> father
201.2 -> and having healthy kids
203.42 -> [Music]

Source: https://www.youtube.com/watch?v=Y5FzjDm_87o