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Bronchopulmonary Dysplasia: Care for Chronic Lung Disease in Infants

>>We’re seeing more survivors of prematurity
and more of the extremes of prematurity.>>Bronchopulmonary Dysplasia is really the
abnormal growth and development of the lungs due to prematurity. Any patient that’s born premature really is
at risk for the disease.>>It is because they were born at a very
critical phase of lung development. And they were either exposed to mechanical
ventilation or as they were growing, their lungs, not being in the womb and being outside,
didn’t develop as they should.>>BPD can be life threatening.>>I hit 24 weeks and my water broke. So, they admitted me into our local hospital
and didn’t go into labor until 32 weeks. We had a C-section and he was not able to
breathe on his own at all. So, right away, he had to be intubated and
then, they whisked him off to the NICU, where he remained for almost two and a half months. Our local hospital was great, but they took
us to a point where that was the max they could take us to. So, we knew
we needed to seek other options. Through the help of some of our doctors there,
we reached out to Dr. Zhang over at CHOP. She was just a godsend.>>The Newborn and Infant Chronic Lung Disease
Program, it’s a specialty program that we started in the fall of 2010.>>There are very few programs in the country
or even in the world that have the specialized focused care for infants with chronic lung
disease, that we can offer here. It’s important to come someplace where the
whole team has experience with the most severe lung disease that an infant can have.>>Some of the factors that influence the
direction of how we treat patients with BPD, it reflects the severity of their disease
and how premature they are. The majority of patients will require some
form of respiratory support, whether it’s just supplemental oxygen, or something a little
bit more intense like mechanical ventilation. So that’s — that’s pretty standard therapy
for all patients that are a part of our Chronic Lung Disease Program. After that, it really just does depend on
what other organ systems are affected. The biggest challenge in treating patients
with BPD is that no two patients are alike. The disease really isn’t a one-size-fits-all,
and the treatment for one patient may not work for another patient. And so, we really have to individualize treatment
based on again, what we’re seeing in the patient.>>The NICU at CHOP really is one of the biggest
and best NICU’s in the world. We have neonatologists, doctors who take care
of babies in the hospital. We have lung doctors on our team. We have heart doctors,
cardiologists on our team. We also have a lot of therapists. We’re unique in that we have the resources
to support not only the medical needs of the baby, but the psychological needs of the baby
and the family, occupational therapy, physical therapy.>>The specialty here is across the board
from best at nursing, to respiratory therapists, to the developmental therapists, to all the
subspecialty consultant. That experience, you can’t get
from a regular NICU. This is a special patient population. They’re chronically ill and they
can be critically ill. We have taken care of more than 400 patients
like this, with the most severe Bronchopulmonary Dysplasia. And that experience is hard to get from a
— from anywhere else.>>CHOP is about three and
a half hours from us. For the distance that you go for your kids,
it’s not that far.>>Well, of course, we expect the best-case
scenario for every patient who’s diagnosed with BPD. The reality is that some challenges will be
met going forward.>>The babies that we get are a specific subset
of babies with severe BPD and these infants are more likely to have difficulties with
development, more likely to have high blood pressure in the lungs, and do have higher
rates of death compared to children who don’t have severe BPD. The good news about BPD is that by and large,
with time, growth and supporting the physiologic needs of the baby, they can outgrow it.>>Neuro-developmentally, there will be some
lag, and again, that’s where we work with physical therapists, speech therapists, occupational
therapists, to make sure that by the time they reach their school ages, that they’re
essentially caught up.>>We want to get our patients home. We want to get them with their families as
healthy as they can possibly be. We want to make sure that we provide them
every opportunity to thrive.>>The journey in a patient that’s born with
Bronchopulmonary Dysplasia can be a long one. It can be a complex one. It can be an overwhelming
and intimidating one. But you just got to take it one step at-a-time
and one-day-at-a-time.>>When babies are working very, very hard to breathe, they spend all of their focus and
all of their energy on breathing. Many of the children on our team ultimately
need a tracheostomy which is a surgical procedure to put an airway in the neck so that we can
continue to support their breathing. The key to having a tracheostomy is that
it allows babies to have their faces free of equipment, which means they can have their
hands and they can start to play, and they can put their hands in their face. They can suck their thumbs; they can play
with their noses. They can do things that babies are supposed
to be doing and it doesn’t interfere with their ability to breathe. And that’s hugely important as babies grow.>>After a tracheostomy, the ability to do
physical therapy, occupational therapy, speech therapy is actually much easier and safer
for the baby, and better tolerated, than to not have a tracheostomy. Babies who have a trach placed, typically
have it in place for at least a few years before it’s safe to actually take
the tracheostomy out.>>November 3rd, he received his surgeries and
that was really the turning point.>>You saw on the chart — his weight just
dramatically skyrocketed –>>Skyrocketed.>>And … was on his way to recovery.>>Preparing for long-term follow-up really
starts from the very beginning when we sit down and say, “All right, here’s our roadmap
for your hospitalization.” And then, those updates over the course of
time are given. “All right, here’s where we are. Here’s what it’s going to take to go home
and here’s what we think you’re going to go home with.”>>But the journey doesn’t end when you walk
out the door of CHOP. In some ways, the journey’s just beginning. We remain a part of that family’s journey
and we continue to see that baby back in our program for many years, sometimes every few
months in the beginning. And then, every year or so
as the child gets older.>>Long-term, we’re looking at months, if not
years of needing extra support breathing.>>The NICU’s really great at training parents
to make sure that they’re ready to adapt to any challenges that they may face in terms
of tracheostomy tube management, ventilator management, issues with medications.>>When we got home, we knew that we were
gonna have the training that CHOP provided us to be able to take care of our son and
kind of just know what we have to do in case of an emergency or just everyday care.>>Charlie, when we met him, he’s basically
failing to grow and cannot do anything else but breathe. By the time he left, he really was a lovely
baby, interactive with everybody, already taking bottle feeding by that time. And went home and continue to thrive.>>You know, he was strictly G tube fed and
now, he is strictly –>>A slice of pizza.>>Yeah, he could eat probably
a third of a pie. He eats everything by mouth,
he drinks by mouth. He’s speaking. I think despite everything that happened with
Charlie, our hopes for Charlie are no different from any other parent’s hopes for their children. And a positive, successful healthy lifestyle
which he’ll have, and just to continue growing, getting better and better every
day, in every way.>>The Children’s Hospital of Philadelphia
is an unbelievable place, an incredible group of people who care about treating children,
who have the resources necessary to do that, come together in a collaborative way, to figure
out how to individualize a treatment plan for that child, whatever it takes.>>This journey is hard. Parents come here because they
have a very, very sick baby. They’re not alone. We have an enormous staff of people who’ve
seen this before and will see it again. And we will support them, and we will help
take care of the baby and we will help take care of the family throughout their journey. ♪♪

One Comment

  1. PR Bori
    PR Bori September 27, 2019

    The best team ever! If not for you Dylan would not be here with us. Dr. Zhang and her team are amazing. We truly love and appreciate every single one of you. You are more than doctors. You are family. God Bless you all. Love Dylan and family❤

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