I started keeping
this blog during the 17th week of my pregnancy with Mira when things
got too overwhelming to update family and friends after visits. Since then, I have fallen in love with writing
out my thoughts and feelings as a healthy way to cope and way to spread awareness
about carrying to term, infant loss, and grief.
I also find it helpful to share my posts with friends and family that
have remained supportive, so I can share how I am doing with a little more comfort
than face to face sometimes brings.
Mira’s 2nd
birthday is quickly approaching, and I found myself thinking a lot about the beginning
of my pregnancy, the part before I started writing and I was disappointed I did
not have a record of that time like I do the rest. I also know the pain, confusion, and trauma that
occurs through a pregnancy with a fatal diagnosis is very isolating. For these two reasons I decided to write out
a summary of what Mira’s life was before I started this blog, from finding out
I was pregnant through 17 weeks when I started this blog. I had actually intended
it to be a short synopsis, but as I started writing I found that impossible so,
if only for me to have it documented (but hopeful for others to read too), here
is the beginning of Mira’s story:
My husband, Joe, and I were excited and full of love for our
daughter, Miriam “Mira” Jordan Ferrara from the very second we found out she
was on her way. We had been trying and
praying for baby for 9 months before those two lines finally appeared in May of
2017. There are so many moments of my
journey with Mira that I will never forget, and the first is that pure and utter
joy I felt when I saw those two lines. I
took two more tests right then (and another the next morning) to be sure. Joe wasn’t home when I took the tests. I used
to only take them when he was there, but after nine months, I did it on my own
now. I threw open the bathroom door,
where the dog was waiting in the hall. I
yelled, “We are having a baby Albus!” and he ran to me and jumped up for a
puppy hug. I told Joe the second he
walked in the door, not being able to wait to tell him in a special way. I have never seen him so happy and full of
shock! Next, I insisted my little
brother be the first to know so we FaceTimed him and shared the news. Ben has autism and is nonverbal, but his grin
was perfect and told me how happy he was!
He had texted more than once over the past few months with a simple “You
are pregnant,” intended as a question, so I knew he was waiting too! Over the
next two days we told our parents and my sister but planned to wait to tell anyone
else until that magic 12th week, just as you are supposed to. I was
a big rule follower then. I called to
make appointments with the OBGYN. I read
all the books and followed each rule while waiting to meet the doctor.
Two weeks later, at work I noticed some spotting. When I saw that blood, I remember gripping with
fear. I had read that this happens and is normal, so I told myself just to
ignore it and it would be fine. A few
hours later I was bleeding a bit more and called the OB. They arranged for an ultrasound early that evening. Joe met me at the hospital and the tech did
her scan while he held my hand. I was
scared but still very hopeful I was overreacting, and everything was fine. The tech was kind but was not allowed to say
anything. But she did not offer pictures
or show us the screen and told us to wait while she sent the results to the
doctor. I knew that was not a good
sign. After getting dressed and waiting
a while, Joe and I were taken to a room and I was handed a phone with the
on-call doctor on the line. She
explained that the ultrasound showed that I had a blighted ovum, basically I
had been pregnant, but only for a few days, the baby never developed any
further. I may miscarry naturally on my own
or may need to have a procedure done.
She wanted bloodwork to confirm, but said she was very sure.
After getting bloodwork completed several times over the
next few days, my HCG level were rising, typical to a healthy pregnancy. The doctor told us to be cautious with our
hope, as she this did not change the ultrasound result. We hoped anyway. We asked everyone we could to pray for us and
our baby. After a week, a repeat
ultrasound showed a 7-week fetus was a heartbeat of 101 bpm! After the tech gave us pictures and showed us
this beating heart, she left me to dress.
I literally fell to my knees in the bathroom as I changed and thanked
God for our miracle! We were told to
remain cautious as the heartbeat was a bit low, it should be 140. We prayed for 140 bpm. We asked others to
pray. An ultrasound a week later showed
a healthy baby with a heartrate of 141 bpm and our pregnancy was declared
healthy and viable! Due us asking for support and prayers during the time we
thought we were miscarrying, several people knew of our pregnancy and with our
rare little miracle we decided to announce at 8 weeks! We had spent the last two weeks full of fear
and stress and were so relieved the hard part was over! We felt we must be safe
now after that horrible experience; we were so naïve.
After 4 weeks of the typical first trimester tiredness and
nausea, Joe and I went to my 12-week appointment. I asked a ton of questions about delivery
options, skin to skin, and tests. The
midwife could not locate our baby’s heartbeat during the exam using a doppler,
but we were told not to worry as she could hear the baby moving around, but as
my uterus was very tilted, not at all a problem for fertility or pregnancy, it
made dopplers hard to use until further along.
We were sent for an ultrasound to get a read on the heartrate. Joe and I were so excited to see the baby
again! The tech commented that I had
already had three ultrasounds when many women had none at this point. I will never forget the irony of my
responding laugh as I said, “I know! But this is the first one I am not
terrified for!” We got to spend a while watching
the baby kick and play and roll around, it was miraculous to watch. The tech was kind and chatted with us
throughout. She showed us the heartbeat
and the different parts of the baby’s sweet body, and handed us a perfect
picture at the end. We had no idea what
she saw and what was to come, she hid it well.
She told me to go ahead and get dressed, then to wait in the
waiting area, as the doctor needed to see the results. Since the doctor had ordered the scan STAT to
save us from any worry after she couldn’t find the heartrate, I had no idea
this was not normal. Joe and I sat in
the waiting area for over an hour. We
were now far beyond when he said he would be to work that day, so I told him to
go. Afterall, we saw the baby he/she was
fine! We just needed the doctor to clear
me to leave. After much convincing, Joe
left for work. I sat for another hour,
texting pictures of the ultrasound to family and friends. I texted my boss to let her know I was still
at the doctor, but everything was great.
I made some calls for work to pass the time, setting up bus stops for
the summer program I ran. I asked once
or twice if they knew how much longer it was and making sure all was fine. I was told by the front desk they were sorry,
the doctor was just so busy.
Finally, the tech called me to a room and said the doctor
was one the phone. I remember precisely
every word of the conversation. I was told over the phone by a doctor I never
met that my baby had a “abdominal wall defect” and I needed to see a maternal
fetal medicine (MFM) specialist right away.
He asked if I knew what MFM was, and without thinking I just told him I
knew what they did on Grey’s Anatomy. He
said that is exactly what they do. It
was too late in the day to go today, but he had gotten me the first appointment
the next morning. In complete shock, I
thanked him and hung up the phone. The
tech asked me if I needed anything and put a hand on my back. I said “No, I’m fine.” Then after a pause looked at her and asked,
“Is this really bad?” She said, “You
just need to wait to see MFM.” She
offered to walk me to my car, but I declined and walked out in a daze. I called Joe in the car and told him what was
happening. Then I called my Mom, who
started preparing to make the 3-hour drive to me to come to the appointment so
we could have another set of ears and support.
And then I went back to work. I know that seems crazy. But I didn’t really think about it, I just
went. My boss asked how it went and I
remember just saying, “Not good. I won’t
be able to come in tomorrow. Or at least
I’ll be late.” Then I told her some details, fairly matter of fact, looking
back, I was clearly in shock at the time.
I pulled the full ultrasound report up from my online patient portal and
saw everything the doctor on the phone left out. Yes, there was a concern for an abdominal
wall defect (specifically an omphalocele) but more importantly, the baby had
hydrocephalus (fluid on the brain) and other things were listed as concerns as
well. I read the report sitting next to
a friend at work as she googled the terms for me so I could read the
prognosis. The first things that came up
when searching “hydrocephalus” was pictures of babies with large heads. I remember saying, “well those babies are
alive!” That was all that mattered to me, that the baby would live so we could
get treatment for whatever this was.
After a long (sleepless) night, my mother, husband, and I
drove to the MFM office. I remember I
was in so much pain. I had even been
going to physical therapy because the pain was so bad from the way the baby laid
on my nerve. (I would later find out this pain would be the daily norm for my
high-risk pregnancy). I had trouble walking though the office the day before and
getting onto the ultrasound table had been difficult. After a night without sleep, this day was
even worse. I really wasn’t worried
about that though. I was supposed to
improve as the baby grew and my tilted uterus moved forward. Anyway, that is why I needed help to get on
the table and situated for a detailed ultrasound. The tech was amazing. She showed us every part of our baby and gave
us lots of pictures. She told my Mom I
was in good hands with the doctors there.
Joe and I felt a little more at ease as we saw our sweet babe looking so
playful and spunky.
After the long ultrasound, we were walked into another room
where the MFM doctor introduced himself.
The doctor started by simply writing “severe hydrocephalus” on a piece
of paper in front of me. I remember asking “SEVERE hydrocephalus? It is severe?” As he had written these words before
explaining anything. He said “Yes,
severe.” Most of what we were told next
would turn out to be wrong, though he said it all with complete authority and
confidence. He went on to explain that
the baby did not have an omphalocele as the OB had been concerned about, just a
umbilical pseudocyst and this was not concerning. (This would end up being wrong, in fact, part
of Mira bowels were in her umbilical cord).
He said the concern was the hydrocephalus. He suggested termination. I interrupted him
and stated, “that is not an option for us.”
I remember his response very clearly, “That is okay to say right now,
but you will need to come around.” He
went on to explain that the baby’s head would get very large (the word
basketball was thrown around a lot) and it would be dangerous to me. He strongly implied that the pregnancy would
kill me if not terminated. When it was
clear that I was not on board with the way the conversation was going, he
switched to focusing on my mother, telling her he had a daughter too and would
never want her to go through this. He
basically told to talk me into the abortion.
I asked questions about the prognosis for the baby and he admitted that
very little could be known this early, I was only 12 weeks along after all, but
he was sure that the baby would not be “normal,” so no reason to do anything
but an abortion. (He was so incredibly
wrong about the value of our sweet baby’s life!) He told us if we did not want
to schedule that we could return in 2 weeks to see if anything had changed with
the baby, which we did.
My mom called our church and had a pastor we cared for and
trusted meet us at home for support. I
don’t remember much of that visit, just the love and kindness he brought, and
that is what mattered. He also gave me
the best advice I have received since Mira was diagnosed. I told him I didn’t know whether to work
towards preparing myself to lose the baby and accepting that or have hope and
pray for a miracle. He told me, “There
is no reason you can’t do both.” I have
heard those words in my head often went through the pregnancy and after Mira
was born.
The first week after the MFM appointment is probably the most
alone I have ever felt. The day after
the appointment my Mom left, sure that I should have an abortion as the doctor
had terrified her and she did not want to lose me (my Mom quickly came around
and became a huge supporter of me carrying to term once she had more
information and the blind fear and shock dissolved). I called another family member to ask for
help in getting my mom to support my choice, and she refused saying there was
no hope I needed to come to terms with having an abortion. I was so lost. The thought of having an abortion killed
me. I did not want it. I felt I would rather die with my baby that
chose to end his/her life. I strongly
considered (for a very short time) running away and just letting the pregnancy
come to term and see what happened. But Joe.
I couldn’t let him lose his child and his wife. Once Joe and I were a
little less in shock we were able to talk and I realized he too did not feel we
were getting the whole story and the thought of an abortion was tearing him
up.
The next week was a blur of research, calls and confusion. I quickly found CHOP Center for Fetal
Diagnosis and called for an appointment.
I gave the nurse all my information and sent my records. I was told it was too early at 12 weeks to
really know much. She took all my
information and assured me I could be seen by the team closer to 18-20
weeks. She encouraged me to keep the
appointment with MFM at 14 weeks and then call back to update CHOPs team after.
I would have file opened in the meantime.
She also said at 12 weeks I should not be told that I was in danger in
anyway or would be later due to hydrocephalus in the baby. She asked several questions about my health
and the baby and assured me, barring any other complications, I would not be in
physical danger carrying the baby, CHOP would assess further when I came down
for an evaluation, but she did not understand why I had been lead to believe
that. I read everything there was to read on
hydrocephalus treatment and prognosis. I
read about how it is rare to find so early but often highly treatable. I researched medical day cares. I researched fetal surgery (not effective for
hydrocephalus). I researched
everything. I thanked God I had access
to medical journals through my school account still! I kept careful notes and
printed the best articles.
At 13 weeks, I followed up with my usual OB again. I saw the OB that had spoken to me throughout
the miscarriage scare, she had been so kind then, personally calling me with
each test result and celebrating with us when a heartbeat was found. I had not spoken to her since that call. She was kind once again. She was very happy I had already sent my
records to CHOP for a second opinion.
She was very supportive of our choice to not have an abortion. She let Joe and I listen to the baby’s
heartbeat for quite a while and enjoy the precious sound on the Doppler. I shared this information with my Mom and
started to feel less alone and more like I could fight for this child.
At 14 weeks, we had our follow up with MFM. I was dreading this. I felt very confused. I had really hated the doctor we had seen,
but at the same time everyone had said he was so good, and I was so overwhelmed
I didn’t ask for another. About an hour
before we were to head out the door for the appointment, I got a call from the
office. I was told that the doctor was
out sick today and since I had asked to only see that doctor, I would need to
reschedule. What?! I was shocked. I said I never requested to only see that doctor. In fact, I would be happy to see
another. The woman was very confused, my
chart said I had made this request. She
said she would certainly have another doctor see me today though and I could
come in as scheduled.
We got to the appointment and had another detailed
ultrasound. My mom joined Joe and I
again, and we all laughed at the baby wiggling and swatting at the ultrasound
probe when the tech tried to push her into different positions. The doctor then sat in the room with us and
shared additional concerns that were seen today as the baby had developed
more. The hydrocephalus was continuing
to get more severe and an abnormality was seen in her c-spine. I asked about fetal surgery, as I knew this
was an option for spinal defects, like spina bifida. The doctor explained that this was similar
but higher on the spine, he did not know if it was an option. He recommended going to CHOP for an evaluation
and was pleased to hear I had already requested a second opinion from their
team and would be going down around when further along. He agreed to have everything sent to them. Next, we met with a genetic counselor who was
very helpful and kind. She explained
some possible diagnoses that they baby may have and collect information on Joe and
I’s history. We scheduled an amniocentesis
for 16 weeks.
The next day I called CHOP again to ensure they had received
all my information and they stated they would be in touch to schedule an evaluation
for 18 weeks, the soonest they could do a fetal MRI. Shortly afterwards, MFM’s office called
me. It was the genetic counselor telling
me that my original doctor was back in today and had seen my ultrasound from
the day before. He wanted her to tell me
that I should not go to CHOP for an evaluation, they could not do anything
different. If I insisted on going, I
should go immediately. I could tell the
counselor was uncomfortable delivering this message. I was confused and explained they could not
do the right testing until 18 weeks. The
counselor tried explaining but was speaking around the issues. I asked, crying at this point, “He wants me
there sooner so I’ll get an abortion sooner, right?” She said yes.
I was hysterical and said that was not happening. She said she understood and supported
that. She called back again shortly and
told me that the doctor was planning to call CHOP and tell them there was no
reason to see me, it would not be a good use of their resources. I was hysterical at this point and told her that
I wanted him to no longer have permission to see my record. She agreed to take care of this.
I immediately called CHOP and tried to stay calm enough to
explain that the doctor was going to call and why. I begged the nurse to not listen to him and still
see me. She was wonderful and said, “Do
you want an abortion?” I said no. She asked
if I wanted to be seen by them. I said
yes. She said I would be then. It didn’t matter what another doctor
said. She also said (clearly angry it
was needed) that if he did actually call “it would be taken care of quickly.” I thanked her endlessly. Then, I pulled myself together, as I was at
work. I apologized to my coworkers for
having to take call and being hysterical in front of them. I had taken the calls from MFM without stepping
away as I had assumed I was just getting my date for the amino and hadn’t stepped
somewhere private until the CHOP call. Then,
I got back to work. Again, looking back,
I wish I had the good sense to take some time off work during all this and care
for myself, but I didn’t. I was too
worried about having time off saved for a maternity leave, and honestly, too
focused on the baby to think about myself.
I do wish my employer had encouraged me to take a leave, but how were
they to know either if I didn’t even know myself what was best?
The next two week again were a blur of research. I had a few potential diagnoses and I read
medical journals to learn about the newest treatments. These were rare diagnoses, so I even search journals
from other countries, requested the translated articles when available and got
abstracts translated when they were not.
I learned everything I could to be prepared to advocate.
At 16 weeks, the amino went well. I had a contraction during the procedure
while the needle was in my uterus, which was painful but over in less than a
minute. The doctor was excellent! Though she did notice the baby’s bladder was
enlarged due to not emptying and added that to the list of concerns. When I received
this news I completely broke down. I was
caught off guard, not expecting any news that day. The doctor stepped out to give me privacy
while I calmed down. The genetic counselor
later told me that the doctor had needed to step into her office and cry a bit
herself. When she returned, the doctor
told me the genetic counselor had told the doctor before I came that I liked to
know everything, and she was worried she should not have told me. I thank her for telling me and told her I did
want all the information, I just wasn’t prepared that day, but she had done the
right thing.
There were two more weeks between my amino and my CHOP
appointment. I had started referring to
it in my head as D-Day, just because it felt so huge, looming over us as we
waited to see if any of the treatments I had researched could be offered. Later, I would find out, that in the carrying-to-term
community the day you received your diagnosis is generally called D-Day
(Diagnosis Day). During that time Joe
and I kept doing everything we could keep bonding with the baby. I research medical day cares some more. I looked into housing and jobs in Philly in
case moving would be necessary. I looked
at the baby registry I had started and wondered if I would need it or not. All talk of baby showers, nurseries, and
maternity leaves had stopped in this time of limbo. When people asked me about plans the coming
weeks or months I said I didn’t know where I would be. I couldn’t plan. I might be in the hospital. If you have fetal surgery you have to stay near
CHOP, or even in the hospital at times.
We waited. We kept talking to the
baby, loving her, and learning about her.
We read to her and sang to her. We
got ready to go to CHOP and get life changing news.
At this point my
blog starts. We get our amino result and
find out they are normal, which rules out some things but gives no
answers. We find out the baby is a girl
though! We celebrate the news and announce the name was had picked out for a
girl, Miriam Jordan, Mira for short. Then
we go to CHOP. We learn no treatment is
available. We meet their amazing palliative
care team that supports us for the next 16 weeks. I give them my FLMA paperwork at the end of
the visit and ask through tears “How long of a maternity leave are you supposed
to take when there is not baby to take care of?” A question that still haunts me. We focus on loving
Mira. We travel to CHOP often to monitor
her growth and ensure good care for Mira and me. We schedule her birthday at the optimal time
to meet her alive. We read to her. We take her so many places. We do our best to fit a lifetime into 16
weeks. Mira is born. She breathes for 53 minutes and we spend our three
days recovery time in the hospital making memories with her along with her
grandparents. We go home broken and empty.
We try to learn how to breathe again without her. We are still learning. But my blog details all this.
Now her whole
story is here in this blog, written out for me anyone
who wants to remember with me. At least her
whole story until now. She may be in
Heaven without me, but Mira is still the most important part of my life. I am her mother, how could she not be? Her love continues to spread as other learn
her story and those who love her and know her story spread love on her behalf.
She has influenced more people than I ever dreamed possible. I am so proud to be her Momma.
So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you
(Selah)
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