In the Interest of V.G., Minor Child ( 2023 )

IN THE COURT OF APPEALS OF IOWA
No. 23-0410
Filed July 26, 2023
IN THE INTEREST OF V.G.,
Minor Child,
STATE OF IOWA,
Appellant,
COLE J. MAYER,
Guardian ad Litem-Appellant.
________________________________________________________________
Appeal from the Iowa District Court for Polk County, Romonda Belcher,
District Associate Judge.
The State and guardian ad litem appeal a juvenile court order dismissing a
child-in-need-of-assistance petition. REVERSED AND REMANDED.
Brenna Bird, Attorney General, and Mary A. Triick (until withdrawal) and
Mackenzie Moran, Assistant Attorneys General, for appellant State.
Cole J. Mayer of Des Moines Juvenile Public Defender, Des Moines,
attorney and guardian ad litem for minor child
G.G., Des Moines, self-represented appellee mother.
Scott L. Bandstra, Des Moines, for appellee father.
Considered by Ahlers, P.J., and Badding and Buller, JJ.
2
BADDING, Judge.
Two-year-old V.G. has cystic fibrosis—a progressive genetic disease that
will eventually lead to her death. Although there is no cure for the disease,
specialists in cystic fibrosis have prescribed therapies for the child that will slow its
progression. But V.G.’s parents resisted some of those therapies, which led to the
child being hospitalized for two weeks in August 2022.
Before she was discharged from the hospital, the child was removed from
her parents’ custody. The State then filed a petition alleging that she was a child
in need of assistance under Iowa Code section 232.96A(5) (2022). The juvenile
court returned the child to her parents in February 2023 and dismissed the State’s
petition the next month. The State and the child’s guardian ad litem appeal. Upon
our de novo review, we reverse and remand for further proceedings.
I. Background Facts and Proceedings
V.G. was born in 2020 and diagnosed with cystic fibrosis several weeks
later. Cystic fibrosis is caused by a mutation in a gene for the chloride channel.
The mutation results in a thick mucus layer on the lungs. The mucus gets stuck in
the airways and can cause infections. V.G. suffers from the “double delta” F508
variation which, because of mucus plugs, blocks her pancreas from producing
enzymes to absorb the fat in her diet.
Since her diagnosis, V.G. has been treated by pediatric pulmonologist
Dr. Alladdin Abosaida—the director of the cystic fibrosis center at Blank Children’s
Hospital. V.G. has appointments at the center every three months, during which
she is seen by a multidisciplinary team that includes a pulmonologist,
gastroenterologist, dietician, physical therapist, respiratory therapist, and social
3
worker. This team developed a care plan for V.G. that was to include the following
daily therapies: (1) “[t]wo 30-minute vest treatments per day when well and four
30-minute vest treatments per day when ill” with a properly fitted vest to help loosen
and clear the thick mucus that can build up in the lungs;1 (2) nebulizer treatments
with prescribed medications, including a three-percent sodium chloride solution
and Pulmozyme, a “mucolytic agent that breaks up and thins mucus”; and
(3) pancreatic enzyme supplement capsules to improve the absorption of vital
nutrients. The center also requires a chest x-ray every year with annual labs, along
with a chest “CT at one year of life and every other after that,” and a
“Sputum/Throat Culture every 3 months” at clinic visits. And once V.G. turned two
years old, the center recommended that she start a medication called Orkambi that
results in “less viscous mucus, less infections, less exacerbations.”
Despite these clear recommendations, the parents have been difficult to
work with during their time at the center according to Dr. Abosaida:
They don’t want to do whatever we recommend, they refuse
treatments, they always look for [a] different approach, which I
encourage people to look at. If there’s anything outside what we
recommend, I would like to discuss it and I just—no matter what you
do, no matter how you explain it, no matter how much time you spend
with them, they don’t want to listen to our recommendations.
These difficulties led to a report to the Iowa Department of Health and Human
Services in May 2021 that the parents were failing to provide V.G. with adequate
medical care. That report, and another that followed in November, were not
confirmed. During this time, V.G.’s weight was an issue, dipping to a body mass
1 Dr. Abosaida described the vest as a “shaking machine or oscillator” that
dislodges mucus from the airways so the patient can cough it up and keep the
airways clear.
4
index just above the third percentile in October. A letter from the center about
V.G.’s condition, which was admitted as an exhibit, explained that the Cystic
Fibrosis Foundation recommends that children with the disease “reach a weight
for length of the 50th percentile by 2 years of age (after age 2 a [body mass index]
of 50% or above).” Dr. Abosaida said that a body mass index “at 50 or above” is
the “magic number” for cystic fibrosis patients because “nutrition is ammunition for
them. They can fight infection, they can fight the inflammation,” and increase their
lung function. V.G.’s body mass index has historically been below that threshold,
leading to several hospitalizations during her short life.
The parents’ displeasure with the center, and Dr. Abosaida in particular,
came to a head during a contentious three-month checkup in March 2022. At that
checkup, the parents refused to engage with the providers who were there to see
V.G. Dr. Abosaida was able to examine V.G., during which he noted some
abnormal lung sounds. He recommended a chest x-ray, both “as part of [her]
annual checkup and also to evaluate her lungs due to” the abnormal findings.
Dr. Abosaida also told the parents that the center’s pediatric gastroenterologist
was there to see V.G. “and to go over her weight gain issues and C. difficile
infection,” which had been recurrent since a hospitalization in October 2021 for
failure to thrive and “MRSA pneumonia.” The parents left before meeting with the
gastroenterologist and refused the chest x-ray because V.G. had one in October.
Given V.G.’s condition, and the center’s discovery that her parents had not refilled
her Pulmozyme prescription since October, a social worker at the center made a
report to the department for denial of critical care. The department conducted a
family assessment, which did not result in any recommendations for services.
5
In May, the family began emailing the center to schedule V.G.’s three-month
checkup. But because they had not completed the required chest x-ray, the center
would not schedule the appointment. The parents accordingly sought care from
Callie Williams, a nurse practitioner with a doctorate in pediatric nursing practice.
Though she had impressive credentials, Williams had never treated a cystic
fibrosis patient before and was unfamiliar with many of the recommended
treatments. She said the purpose of the parents’ appointment with her in July was
to obtain a throat swab for V.G. The swab was positive for pseudomonas, a
bacterium in the lungs that “can accelerate the progression in cystic fibrosis and
cause lung damage.” According to Dr. Abosaida, “when kids at this age—typically
when they do treatments and keep their airway clearance, you have less chance
of getting [p]seudomonas. But if you don’t do treatments and a lot of thick mucus
in the airways, then you have a higher chance of acquiring [p]seudomonas.”
Williams contacted Dr. Abosaida with the results, and he recommended that
the parents take V.G. to the emergency room for possible admission into the
hospital. The parents did that, but the emergency room physician noted that while
V.G. had a cough, she was not having trouble breathing, her vitals were stable,
and a chest x-ray was reassuring. So, after consultation with the center, the
emergency room physician decided against hospital admission in favor of treating
V.G. with oral antibiotics. According to his notes, the parents were “upset and
shared that they feel like the pulmonology clinic wants [their] daughter to die and
they are abusing her.”
After the July emergency room visit, the center tried to schedule a follow-up
appointment with V.G., which the parents refused. Instead, they obtained a referral
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from V.G.’s primary care provider, advanced registered nurse practitioner Sarah
Lee, to the cystic fibrosis center at the University of Iowa Hospitals and Clinics—
the only other such center in Iowa. In an undated letter, Lee noted that while the
parents “have always been receptive to my advice,” she has “advised them to
continue to take her to the Cystic Fibrosis clinics for follow up to prevent severe
disease and extend [V.G.’s] life.”
The child was seen at the University of Iowa in August. An email from
Dr. Rebecca Weiner, the pediatric pulmonologist at the university, to the center’s
manager at Blank described her appointment with V.G.’s mother as “pretty
malignant”:
She felt they were being targeted to find anything wrong. . . . The
first sentence out of her mouth was “we wanted to see if we wouldn’t
be abused here like we were at Blank.” She said that you guys
refused to “give her a visit” and refused to “give her a culture and
such.” Dad was mainly quiet in the corner. It was a hard visit, it was
very hard to have a useful conversation with her as she was playing
the blame game.
Dr. Weiner outlined a few important points about her visit with the family,
including that the “therapies Blank has recommended are standard and the same
I would advise.” She also expressed concerned with V.G.’s weight, noting her
“[g]rowth is horrible.” Dr. Weiner recommended switching to “weight based
enzymes,” stating the parents were “wildly underdosing by trying to estimate grams
of fat.”2 A similar recommendation had been made by the pediatric
gastroenterologist at Blank.
2 Dr. Abosaida explained the difference between the two methods:
[I]f it’s based on weight, you calculate the dose and you tell them, for
example, you take three pills before each meal and you take two pills
7
Less than a week after their appointment at the University of Iowa, the
parents brought V.G. to the emergency room at Blank with a worsening cough and
weight loss. The child was admitted for cystic fibrosis exacerbation. On
admission, her pediatric gastroenterologist noted “that her weight had dropped
over the last months and . . . was very below the growth chart with a weight for
length at the 2%.” He emphasized that the parents should be dosing her enzymes
by weight rather than the fat content of her meals, but they again refused.
In the medical notes that followed V.G.’s admission, multiple providers at
the hospital documented the parents’ hostile response toward their treatment
recommendations. One example, among many, was a note from a nurse about a
week into the child’s hospitalization:
[The mother] stated that she will no longer allow nurses or
respiratory therapist in the room to do treatments other than IV
antibiotics. Mom states that she will no longer push her call light to
allow staff to observe her giving the enzymes and that she will do it
on her own because we are lying about doses given. She also stated
that she will be giving her own respiratory treatments and that she
will no longer use their vest and will do pulm cup treatments instead.
Because the parents refused to implement the recommended treatment for
V.G., another report was made to the department before she was discharged from
the hospital. When the investigator consulted Dr. Abosaida, he worried about
whether the child “would receive adequate treatment upon discharge, based on
before snacks. But you cannot exceed, for example, 20 pills a day.
So you have limits, you have a plan, easy.
And then the fat content, you have to see what’s in the meal,
how much fat in the meal, you have to measure it, you have to be
really close to accurate. And then based on that you calculate the
amount of enzymes they need.
According to Dr. Abosaida, the problem with calculating by fat content for children
is that children often don’t finish their meals, resulting in a skewed enzyme dosage.
8
history and the parents continuing to argue with providers while inpatient at the
hospital.” Dr. Abosaida told the investigator that V.G. would “not die immediately
if she does not receive therapies as prescribed, but she could survive for another
6 months to 3 years, dying a slow death. . . . [S]he will lose weight, have bacteria
further colonize in her lungs, and have slow respiratory failure over time.”
The report was founded and, at the end of August, V.G. was removed from
her parents’ custody and the subject of a petition to adjudicate her as a child in
need of assistance under Iowa Code section 232.96A(5). She was placed with a
relative, where the parents were able to see her every day and participate in her
medical care. By November, V.G.’s body mass index was almost at the fifty-
percent mark. But the parents still deviated from some of the therapies. A medical
record from that month noted the mother commented that “[s]ometimes [V.G.] does
not want to do [the] vest as she would rather be playing with others, so on those
occasions they will do hand clapping.” And the parents kept dosing the child’s
enzymes by the fat content of her meals instead of her weight.
In February 2023, after a series of hearings on the child’s removal and
adjudication, the juvenile court returned V.G. to her parents’ custody, finding she
would not “be placed in imminent harm, provided that we have some services in
place to ensure that she continues to have the care that she’s been provided since
she was removed.” A few weeks later, the court dismissed the State’s adjudication
petition, ruling:
Since the temporary removal, the parents have continued to
provide care for the child, including her nebulizer treatments,
medication management, medical appointments and providing
enzymes. The parents have a fundamental right to care for their
child. While questioning the cystic fibrosis medical staff’s
9
recommendations, they were not “unwilling or unable to provide such
treatment.” They continued to try to schedule appointments for the
child after receiving no response or having appointments canceled
by the Blank clinic. Admittedly, there was a significant breakdown of
the parents and medical staff relationship. Dr. Abosaida did not
believe the parents were doing enough in their care of the child, and
the parents did not believe Dr. Abosaida and the Blank clinic were
doing enough in its care of the child. The parents chose to seek
additional treatments and alternative options, some of which were
recommended by the Cystic Fibrosis Foundation, that Dr. Abosaida
so heavily relied upon. They also sought holistic remedies to ease
the child’s symptoms and reported observing the benefits therefrom.
The child’s response to COVID, which was not known to
Dr. Abosaida at the time, more than likely attributed to the child’s loss
of weight and some deterioration of her condition.[3]
. . . . The parents have remained cooperative and have
followed the recommendations of the Department. . . . The parents
have not changed the manner of care for the child since the child
was removed from their home. The child has gained weight and is
doing well. The parents have demonstrated a willingness and ability
to ensure the child is getting care to address her incurable disease.
Both the State and the guardian ad litem appeal from this ruling, which was
stayed by order of our supreme court on the State’s emergency motion.4
II. Standard of Review
We review child-in-need-of-assistance proceedings de novo. In re J.S., 846
N.W.2d 36, 40 (Iowa 2014). Though we give weight to the fact findings of the
juvenile court, we are not bound by them. Id. Thus, “our review is not a rubber
stamp of what has come before.” In re J.W., No. 14-0515, 2014 WL 3749419, at *1
3 As the State points out, medical records from Blank and the University of Iowa
noted the child tested positive for COVID-19 at the end of July. None of the
providers linked that positive test to her condition in August when she was
hospitalized. In fact, the parents told the emergency room physician who saw V.G.
before her admission that she had recovered from COVID-19.
4 The supreme court’s order allowed the child to remain in her parents’ custody
under the protective supervision of the department during the appeal.
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(Iowa Ct. App. July 30, 2014). The most important consideration is the best
interests of the child. See J.S., 846 N.W.2d at 40.
III. Analysis
We start our analysis by recognizing that “[n]ormally, there is no justification
for the State’s interference in the private relations of a family or for the State’s
examination of the judgment of parents in making decisions concerning the well
being of their children.” In re K.M., 653 N.W.2d 602, 607 (Iowa 2002) (citing Troxel
v. Granville, 530 U.S. 57, 68–69 (2000)). “[P]arents’ constitutionally protected
authority over their children includes the right to make decisions regarding health
care.” Maxine Eichner, 50 U.C. Davis L. Rev. 205, 242 (2016) (citing Parham v.
J.R., 442 U.S. 584, 602 (1977)). Yet this authority is not absolute. See K.M., 653
N.W.2d at 608. “[W]hen parents abdicate their responsibility to properly care for
their children,” the State must “intercede and provide the necessary care.” Id. But
at what point does the State’s duty to ensure “that every child within its borders
receives proper care and treatment,” trump the right of the child’s parents to make
medical decisions for their child? In re A.M., 856 N.W.2d 365, 376 (Iowa 2014)
(citation omitted).
Under Iowa Code section 232.96A(5), our legislature has determined that
point is reached when a “child is in need of medical treatment to cure, alleviate, or
prevent serious physical injury or illness and whose parent, guardian, or custodian
is unwilling or unable to provide such treatment.” The State has the burden to
prove this ground for adjudication by clear and convincing evidence. See Iowa
Code § 232.96(2).
11
On appeal, the State claims that it met its burden because the evidence
showed V.G. is “clearly in need of a number of specific, consistent, daily medical
treatments to address her cystic fibrosis and her parents had been unwilling or
unable to provide the necessary treatment until” the department and the juvenile
court became involved. The guardian ad litem echoes this claim, pointing out: “The
main issue of this case is whether or not the parents were unwilling to provide [the]
necessary care and treatment.”
The parents focus on that issue as well, arguing that they did provide their
child with medical treatment. The problem, however, is that the treatment they
provided was not what the pediatric cystic fibrosis specialists agreed was required
to prolong V.G.’s life. Cf. In re M.R.R., No. 10-1996, 2011 WL 4378037, at *6 (Iowa
Ct. App. Sept. 21, 2011) (“Making a decision to give one’s child medication and/or
treatment may find the parents faced with weighing the differing opinions of
medical experts.”); In re D.J., No. 06-0625, 2006 WL 1751269, at *4 (Iowa Ct. App.
June 28, 2006) (reversing juvenile court order that authorized eye surgery for a
child over his mother’s objection because of the “physicians’ uncertainty and their
unwillingness to offer an opinion without further examination”). Those specialists—
at the only two cystic fibrosis clinics in Iowa—recommended the same standard
treatments for the child: (1) vest treatments with a properly fitted vest; (2) nebulizer
treatments with a three-percent sodium chloride solution and Pulmozyme;
(3) pancreatic enzyme supplement capsules dosed by weight; (4) starting the
Orkambi medication at age two; and (5) annual chest x-rays. The parents resisted
each of these, in part because of perceived side effects from the treatments and
V.G.’s reaction to them.
12
The effectiveness, invasiveness, and risks of proposed interventions should
be considered, along with the seriousness of a child’s medical condition, in
“balancing the parents’ fundamental interest in directing the upbringing of the child
with the state’s interests.” In re I.S., 199 N.E.3d 1130, 1150 (Ohio Ct. App. 2022);
see also M.R.R., 2011 WL 4378037, at *6 n.16 (comparing the decision whether
to vaccinate a child for certain illnesses with decisions involving a “child who may
die of a disease for which there is a treatment”). “The more effective the
intervention, the heavier the weight that will be placed on the state’s side of the
scale; the more invasive the procedure and the more risks posed by the
intervention, the lighter the weight placed on the state’s side of the scale.” I.S.,
199 N.E.3d at 1154. “The linchpin in all cases discussing the ‘best interests of a
child,’ when a parent refuses to authorize medical care, is an evaluation of the risk
of the procedure compared to its potential success.” Newmark v. Williams/DCPS,
588 A.2d 1108, 1117 (Del. 1991). Here, the evidence showed the risks of the
recommended treatments were minimal compared to their benefits. See id. at
1120 (“Courts have consistently authorized state intervention when parents object
to only minimally intrusive treatment which poses little or no risk to a child’s
health.”).
First, against Dr. Abosaida’s recommendation, the parents obtained a vest
that was too big for V.G. Because of its large size, the vest’s oscillating pods
landed on V.G.’s abdomen rather than her lung fields, meaning it was not effective
in dislodging the mucus in her airways. The parents also admitted they were not
administering the prescribed amount of vest treatments at home, which was
apparent from her stay at the hospital in August when she was “crying and
13
screaming every time they put the vest on her.” They preferred to use alternate
airway clearance methods authorized by the Cystic Fibrosis Foundation, like hand
clapping. The mother points to a snippet from the foundation’s website, admitted
as an exhibit at the hearings, that states no form of airway clearance techniques
“was shown to be superior to another form.” But she ignores the part that says the
choice of technique should “be individualized to the patient, as patient-specific
factors may make one form . . . superior to another for the individual patient.” The
individualized form prescribed for V.G. was a “properly fitting vest.”
Second, the parents were not consistently using the three-percent sodium
chloride solution and Pulmozyme medications that were to be administered
through V.G.’s nebulizer. In place of the sodium chloride, the parents were taking
V.G. to a salt lounge.5 While Dr. Abosaida was ambivalent about that therapy, he
testified “it cannot replace the medical treatments.” He was also adamant about
the need for Pulmozyme, the “only FDA approved mucolytic agent that breaks up
and thins mucus,” as was Dr. Weiner at the University of Iowa. The parents did
not want to use that medication because they said it caused lung bleeds. There
was no evidence in V.G.’s medical records, however, that she ever suffered from
any lung bleeds. And Dr. Abosaida testified he had “never seen Pulmozyme cause
bleeding directly to someone at her age or even older.” Neither Dr. Abosaida nor
Dr. Weiner would prescribe Mucomyst, an alternate medication the parents wanted
5 At some points in the record, the parents claimed the three-percent sodium
chloride solution was out of stock. But they had been given instructions on how to
dilute a higher concentration that was available.
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to use, because data showed that “it does not work” and carries a risk of
bronchospasms.
Third, the parents refused to dose V.G.’s required pancreatic enzyme
supplements by her weight rather than the fat content of her meals. Dr. Abosaida
testified that while parents can choose between the two approaches, both of which
were acceptable by the standards of the Cystic Fibrosis Foundation, “we want
results, we want to see [body mass index] head in the 50th percentile. And if you
don’t, we need to change strategies.” When V.G.’s body mass index dropped to
three percent, Dr. Abosaida said that was because “she had mal-absorption, she
needed enzymes, she needed the proper dose of enzymes that can help her
absorb the food that she eats.” He accordingly recommended weight-based
dosing, as did the pediatric gastroenterologist and Dr. Weiner, who believed the
parents were “wildly underdosing [V.G.] by trying to estimate grams of fat.” Yet,
even after V.G.’s hospitalization, the parents insisted on dosing her enzymes by
the fat content in her meals. See In re J.A., No. 21-1853, 2022 WL 468715, at *5
(Iowa Ct. App. Feb. 16, 2022) (affirming adjudication under renumbered
section 232.96A(5) where it was undisputed the child “needs prescribed medicine
for his life-threatening asthma” but the parents unilaterally reduced his dosage).
Fourth, the parents refused to start V.G. on Orkambi, which Dr. Abosaida
described as “one of the best things that happened in cystic fibrosis in the last five
years.” The mother objected to it because she thought it had high levels of fluoride
that could cause “brain problems.” However, Dr. Weiner told the parents that
Orkambi was not associated with any neurologic side effects. The treatment the
parents wanted instead, a technology called “CRISPR/Cas9,” was “still at the
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bench research [stage], not even at clinic trial.” Dr. Abosaida said the research is
ongoing and “might take 20, 30, 40, 50 years, who knows.” With a progressive
disease like cystic fibrosis, Dr. Abosaida testified “every minute counts.” See In re
L.T., 494 N.W.2d 450, 453 (Iowa 1992) (affirming adjudication where a child’s
mother refused “to consider the treatment service which [the child] now requires
above all else”).
Fifth, the parents pushed back on obtaining chest x-rays for V.G.
Dr. Abosaida said annual x-rays were “very important” for the child’s care because
they help monitor progression of the disease and the presence of mucus plugs.
An x-ray from months earlier would not show “how bad is her disease right now,”
According to Dr. Abosaida. They also refused Dr. Weiner’s request for an x-ray in
August, just before V.G.’s hospitalization, after she noted abnormalities in the
child’s examination. Like Dr. Abosaida, Dr. Weiner said that made it “difficult for
[her] to treat [V.G.] adequately.” See id. (affirming adjudication where a child’s
mother refused “to cooperate in extending to [the child] the care she needs”).
During the juvenile court proceedings, the parents expressed concern about the
amount of radiation the child had been exposed to in her young life. But when
asked about that concern, Dr. Abosaida explained the benefits of x-rays for
children with cystic fibrosis outweighed their risk, noting that the radiation in chest
x-rays “is very, very low.”
The parties agree that the child’s disease is a serious medical condition that
will progressively worsen as she ages. Cf. M.R.R., 2011 WL 4378037, at *6
(finding there was not “clear and convincing evidence to support the juvenile
court’s findings that the child was in need of medication to alleviate death or other
16
serious consequences”). Dr. Abosaida testified that people with cystic fibrosis
used to die in their twenties and thirties. But now, “with all these therapies we
have, the life expectancy . . . is 53 years old.” The therapies, however, have “to
be executed as is. You cannot alter it, there’s no way.” When V.G. was
hospitalized in August, Dr. Abosaida testified that V.G. was not on track for that
extended life expectancy because she was not getting the proper treatments at
home. He explained: “You have to do everything you have, you have to use all the
tools available to . . . slow the progression. And if you don’t do that, then people
don’t do well with [cystic fibrosis].” Dr. Weiner said the same, telling the parents
“that adequate nutrition, and adequate treatment of pulmonary ailments (such as
exacerbations, pseudomonas infection, etc.) will affect her overall health and how
long [V.G.] lives. Adequate care and standard of care treatments will prolong her
life.”
On this record, we find clear and convincing evidence that the parents were
“unwilling or unable to provide” the recommended treatment for V.G.’s disease and
the court’s aid is required to make sure that treatment is administered. See Iowa
Code §§ 232.96(9), .96A(5). In reaching this conclusion, we do not doubt the
parents’ love or concern for V.G. As the State said in the closing paragraph of its
petition on appeal:
We are not here to pass judgment on V.G.’s parents. We are here
to ensure she is provided proper medical care going forward, so she
can grow and thrive as best as possible given her cystic fibrosis
diagnosis. The best way to achieve that end is to adjudicate her a
child in need of assistance and thereby continue [the department]
and juvenile court oversite of her vulnerable condition.
17
For these reasons, we reverse the juvenile court’s ruling dismissing the
State’s petition to adjudicate V.G. a child in need of assistance under
section 232.96A(5) and remand for adjudication and further proceedings.
REVERSED AND REMANDED.