Emma Hope

Emma Hope
I asked Melissa if she
would let me tell her story, a journey that began over a year ago. She
answered, “That’s not a problem; I would love to share our story 🙂 I am very
proud of Miss Emma and would love to share how miracles can happen.
            This
is a true story about one of the most difficult but also one of the most moving
times I have ever shared with any family.
            I
received a phone call a little over a year ago. Dear friends of ours had retired
and moved to Arizona after having had enough of our Minnesota winters. They
were calling because their own daughter was in a hospital near her home in
Wisconsin with a brain aneurysm. Emergency surgery was scheduled for later that
day. Her prognosis did not look promising. My friends were still reeling from
the news, but that was not all. Their daughter had been caring for her own
adult daughter who had her own challenges, including mental health issues and a
toddler that her mother felt Melissa was unable to care for by herself. Now
that her mother was in the hospital, Melissa was essentially homeless and without
a caregiver. And she was pregnant.
            My
friends were desperate. Could I help find Melissa a safe place to stay? Would
she be eligible for a shelter? She was still staying in Wisconsin and I lived
in Minneapolis. Would she qualify for benefits and help here before
establishing residency? I couldn’t answer any of their questions without doing
my homework, but said I would do all that I could.
            My
first day of phone calls dredged up nothing. There were long waiting lists for
all of the shelters. Melissa was not technically eligible for most of them
because she was not a victim of domestic abuse, nor was she receiving Minnesota
Social Security Disability benefits, and she had not been a state resident for the required 60 days. The next day I posted urgent requests on our local
childbirth collective resource bulletin board for any help or suggestions. The
birth professionals throughout the community here rose to the occasion; I soon
had lists of names and agencies to call. Finally, one connection led to another
and the grandparents off in Arizona discovered a tiny shelter here – only 7 beds—right here in Minneapolis run by 4
Indian nuns who were members of the Missionaries of Charity of Calcutta, the
order of sisters that Mother Teresa founded in 1950. Their only stipulations
were that the mother was homeless and pregnant and agreed to abide by their
rules. BINGO! Melissa could go there. She could then apply to the local social
services and begin the process of finding an appropriate permanent living situation. Being
near where I live also helped. I could visit her often and help her negotiate
both the welfare system in our county and the medical clinics where she would
get optimum prenatal care.
            Her
uncle drove her to Minneapolis the very next day and I met her at the shelter with
a fresh bouquet of flowers for her new room and to help her get settled. The
relatives in Wisconsin, though they were not in a position to house her, did
arrange for her to see a doctor before she left. An ultrasound, a routine
procedure to help assess the age of the baby and establish a guess- or due-date
was ordered but revealed some disturbing results. Within hours, she was being referred
to the neonatologists at a major medical center in St. Paul. There were no advanced
diagnostics available in that part of Wisconsin so they wanted further tests
done in Minnesota. The results were shattering: the baby had inherited a genetic
chromosomal deficiency and had a
condition termed fetal or lethal anomaly. That meant that this baby may not
live, either to term, or if she did make it that far, there was no guarantee
that she would live after that.
            The
family was shattered by this latest development. They were still not out of the
woods with Melissa’s mom, and were focusing all their energy on her. I assured
them that Melissa was doing OK. The shelter was able to give Melissa her own
room and she seemed to be settling in just fine.
            During
the following week we heard that Melissa’s mother was doing amazingly well,
which was a huge relief. In the meantime I had lined up appointments for
Melissa: WIC, food stamps, social worker, etc., and we had her medical records
forwarded to a neonatologist at a high risk clinic that would be able to let us
know what her options were, and what the possibilities might be for this baby.
We knew by now that it was a girl, and Melissa promptly named her Emma Hope.
            While
Melissa and I were getting to know each other and the doctors were putting
together a plan of care for her, her family members were discussing their opinions, unbeknownst to us.
Some felt that an abortion was the only route for Melissa given what they now
knew. Others felt that such a choice would harm both Melissa’s fragile spirit
and her future. Angry words were flying back and forth between the two camps.
            About
this time I learned that Melissa was married. When she was pregnant
the first time with Lexi who was now a toddler and living with an aunt, she and
Mike had married. The stress of raising and supporting a family had become too
much for Mike who had his own set of challenges, and he had left, though he
stayed in touch with Melissa. When he heard about Melissa’s present situation,
he again showed up, offering his sincere support and concern, though he wasn’t
financially stable enough to offer her much else than that. Even his living
situation was tentative – a couch at a relative’s house.  
            During
the ensuing weeks we learned all that we could about her baby’s condition which
was now confirmed: hypoplastic left heart
syndrome
or HLHS.*
            Melissa’s
grandparents had also been researching HLHS and were sending me emails with
their findings several times a day. They concluded early on that perhaps it
would be better to bring this baby home after birth and just love her for as
long as they had her until Nature took its course. Melissa and I talked about
these options and explored every possible scenario. I found her to be fully capable
of understanding the seriousness of the prognosis and certainly able to make
choices, in spite of all her challenges. She decided right from the start to
carry her baby to term. She was barely 6 months along when we first met, and
the hospital had presented her with the option of terminating the pregnancy.
She was quite aware of the finality of death having recently lost a beloved grandmother.
            Her
family was still very absorbed with Melissa’s mother and helping her recover,
so Melissa was still very much my constant companion when I wasn’t working. She
had never lived in a city before, had never been on a bus or train. She had
literally come out of the woods of Wisconsin. She didn’t know how to find out
where things were. We had a great time learning all these things those early
months. I suggested she pull the bus stop cord on our first bus ride. She
hesitated and then gently tugged on the pull rope until a buzzer went off and
then giggled and blushed. She had done it! We went out to the Mall Of America
by train for the first time. We ate Chinese phÓ,
Mexican burritos and her first-ever chai lattes. I brought her to my apartment
and we cooked things she had never heard of. She still teases me about making her eat seaweed – sushi – (I
actually only made her taste it) and
avocados (guacamole) and artichokes. Melissa went from being petrified of the
city to being quite street savvy in a very short time. All of a sudden I was
getting texts on my phone that she was at a beauty parlor getting a haircut, or
out somewhere at a Chipolte restaurant. A friend of mine picked us both up one
day and bought Melissa several maternity outfits before treating us to lunch.
By now she was bursting out of her men’s cargo jeans and jerseys.
            The
neonatal clinic visits were another story. At the beginning of each
appointment, the clinic would do an ultrasound. We could see her baby in 3-D,
moving and looking terribly cute and very much alive, but of course we had to
remind ourselves that Emma was living off of her Mommy’s heart at this point
and wouldn’t do as well once she had only her own defective one to depend on.
Melissa was presented with all the statistics and possible outcomes of all the
procedures. I personally felt that it would be better to have her baby close
for all of her short life than be subjected to numerous surgeries and long
hospital stays hooked up to all sorts of monitors and not being able to be held
outside of her isolette most of the time. What would bonding look like? I told
Melissa exactly how I felt and so did her grandparents who were also leaning
toward compassionate care while rejecting the surgical route. This also made
sense to Melissa at the time. Then came the appointment with the two surgeons.
            Some
of the most eminent surgeons in the country who are treating HLHS happen to
practice in Minnesota at both the Mayo Clinic and Minneapolis Children’s Hospital. They
met with Melissa and her husband and talked to them about “Giving her their
best shot!” and, “We want to give her a chance….”
Nothing about her having less chance than most babies with HLHS because of the
addition of the genetic problems. I don’t know if it is because they are
surgeons, that they hoped to hone their skills and hoped too, to eventually
perfect the surgery for these babies, but what came across in the end was, to
Melissa and Mike at least, a chance to grab at hope and possibly a cure. 


          I tried to explain what that
would entail and that no guarantee was being given that Emma would even survive
each surgery or the recovery phase after each one. But I also had to trust that
Melissa was Emma Hope’s mom, in spite of everything else, and could and should
be able to decide whatever choices she had to live with for the rest of her
life. In the meantime while the rest of the family decided together that
compassionate or only palliative care was the best option in their eyes,
Melissa finally decided otherwise. She would give her baby every chance she
could… and the differing opinions among the relatives continued.

           About this time I discovered a
beautiful book called
Waiting with Gabriel: A
Story of Cherishing a Baby’s Brief Life

by Amy Kuebelbeck, (Loyola Press, 2003). 
Gabriel was also born in
Minnesota with HLHS. His parents chose compassionate care and stayed with him
for his entire, though short life. He died shortly after birth in his mother’s
arms. With my encouragement most of her family read the book. So did Melissa.

            Then
then emails started once again. Couldn’t I persuade Melissa and
Mike to change their minds? Some felt that she
couldn’t possibly decide these things for herself, that she was too handicapped
to comprehend the consequences.
            I
felt otherwise. As part of my own research I even arranged to spend time at Alexandra’s House, an infant
hospice in Kansas City, Missouri and peppered them with questions about how I
could best support Melissa and her family. I spoke with providers, exploring
everything I thought would need doing: permission from the nuns to bring Emma
home to the shelter and explaining how the hospice nurses and I would take care
of Emma and Melissa for as long as was needed. The nuns offered to have the
wake in their little chapel when the time came, and a priest from the family’s
parish in Wisconsin was notified and agreed to be on call to come whenever he
was needed. A parishioner lovingly built a beautiful little coffin. So, for
Melissa to change her mind and decide she just couldn’t do nothing, which was also
a choice, was very difficult for some of her family to accept.
            Finally I added my opinion to the discussion by writing an open letter to Melissa’s family explaining how I felt: that I didn’t
have to live with her decision for the rest of my life, nor did they. Only
Melissa could ultimately decide what was best for her and her baby and we must
not only respect that choice, but we have to continue to surround her with love
and support her.
            Emma decided to arrive just before her due date on June 14th. After
a short labor she was delivered vaginally and needed little help starting up on
her own. She weighed in at a whopping 8 pounds and 3 ounces. We got to see her
briefly as she was being whisked off to the NICU where she would be prepped for
surgery during the coming days. Melissa’s mother was even there, having made an
amazing recovery herself in time to see her little granddaughter for the first
time.
            The
next six weeks were a blur of doctor appointments, tests, surgeries, and ups
and downs while constantly holding our breaths hoping that things would continue
to go forward for beautiful little Emma. Melissa was able to stay at the Ronald
McDonald House near the hospital and visit Emma. She pumped her milk
and delivered it daily to the NICU. Emma just surprised us all and kept growing
with very few setbacks during those early weeks. While all this was going on,
Mike started looking for an apartment to bring his little family home to. When
Emma was finally discharged they moved to a town in southern Minnesota. 
            Part
of our concern was if Melissa and Mike would actually manage to learn and
demonstrate that they could perform all the various care and procedures that
Emma would require. During all of this time Melissa had often neglected her own
battle with diabetes, and that alone left us wondering if she could manage that
along with attending to Emma’s needs. But Melissa surprised us all. At one
point she suddenly rose to the occasion. Not only was she managing to follow
her own scrupulous diet and keeping her blood sugar levels within range, but
she learned how to suction, tube feed and maintain Emma’s equipment in time to
bring her home.
            The
second surgery went as well as could be expected when Emma was 4 months old and
Melissa moved back to the Ronald McDonald House once again. And again, Mike and
Melissa were able to take Emma home after another month in the hospital. Emma
continues to do well. She can sit up, reaches for things, coos and laughs and
enjoys her big sister Lexi whenever they can visit. Emma is 9 months old now and
weighs in at 17 pounds! She is a miracle. She’s gone beyond any one’s wildest
dreams for her.
            I
have learned from Melissa that I can never say what might be best for anyone
else. I have learned to stand in awe of the power of a mother’s love. Mike and
Melissa know they might not have Emma forever, but they have learned how to
live only one day at a time. I have learned a lot from all of them: Melissa,
Mike and Emma. Thank you. Forgive us all for ever doubting you.



*More on HLHS:

Hypoplastic left heart syndrome occurs when parts of the left side of the heart (mitral valve, left ventricle, aortic valve, and aorta) do not develop completely, meaning that the left ventricle of the heart is severely underdeveloped. The condition is present at birth (congenital). Modern technology is actually addressing this with staged surgeries to first close off parts of the heart using what is called the Norwood Procedure which is usually done shortly after birth, and then two further open heart surgeries are done to attempt to reconstruct the heart in order to allow for better circulation. Without life-prolonging interventions, HLHS is fatal, but with intervention, an infant may live with a five-year survival of about 65 % even after surgical repair. Hypoplastic left heart syndrome accounts for 2 to 3 % of all congenital heart disease with a prevalence rate of two to three cases per 10,000 live births in the United States.
            A pediatric cardiothoracic surgeon may perform a series of operations or a full heart transplant. In the meantime, the ductus must be kept open to allow blood-flow using medication containing prostaglandin. Sub-atmospheric concentrations of oxygen are used in the preoperative and postoperative care of infants with HLHS. The Norwood Procedure is done almost immediately after birth, the Glenn Procedure at 3 to 6 months of age, and the Fontan Procedure at 3 to 5 years of age. Those babies who undergo cardiac transplantation have a 5-year survival of approximately 50-60% as a group. However, it is becoming clear that there are higher risk subsets where 5 year survival is lower including those with lower birth weight, additional congenital anomalies, a genetic syndrome or those with a highly restrictive atrial septum. For patients without these additional risk factors, 5 year survival now approaches 80%. Further, studies show that about 50% of those children who survive surgery in the early development of staged reconstruction have developmental delay or need special education; about 25% of these surgical survivors have severe disabilities. There is growing evidence that while the incidence of developmental and behavioral disabilities continues to be higher than that in the general population, children operated upon in the more current era have shown significantly better neurological outcomes.
            Some parents choose an option referred to as compassionate care, and these infants receive treatment aimed at relieving suffering without extending life. Compassionate care is overseen by a physician, and may be carried out either in the hospital or at home. Studies show that when presented with all options, about half of parents choose life-prolonging interventions and half choose compassionate care, although when I began questioning our hospital’s neonatal cardiologists, they told me that they had actually never had a family choose compassionate care and that over 99% here in Minnesota at least went ahead with the surgeries. A study in 2003 concluded that a selection of physicians who are experts in the care of children with HLHS were evenly split when asked what they would do if their own children were born with HLHS, with 1/3 stating that they would choose surgery, 1/3 stating that they would choose palliative or compassionate treatment without surgery, and 1/3 stating that they are uncertain which choice they would make. The three-stage procedure is a palliative procedure (not a cure), as the child’s circulation is made to work with only two of the heart’s four chambers.
            While infants successfully treated for HLHS have a good chance of survival, they may experience chronic health problems for the rest of their lives. The 3-stage surgeries were developed in the early 1980s with no survivors prior to that time. Therefore, the earliest survivors are in their early 30s today and the long term prognosis is unknown.  However, the advances in surgical and medical techniques have helped increase the survival rate dramatically since the surgeries were first developed.
            As is true for patients with other types of heart defects involving malformed valves, HLHS patients run a high risk of endocarditis, and must be monitored by a cardiologist for the rest of their lives to check on their heart function. The three stage Norwood Procedure only increases the life span of the heart as HLHS cannot be cured. A heart transplant may be needed at some point in the child’s lifetime. By the time the child is 3 or 4 years old, they may become a good candidate for a heart transplant, though of the over 1,000 children a year in the U.S. waiting for a donor heart, only about 70 actually receive one. Of those, there is still the possibility of the body rejecting the new organ, or of developing other side effects from the anti-rejection drugs, cancer being one of them.
©Stephanie Sorensen 2013

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