How Hunters Journey Started
Hunters’ journey starts the same as most little
kids. My husband and I had decided to start trying to add to our family in June
2019. We were very blessed and only had to wait 4 months until we were gifted
our little Hunter. On October 21st we found out we were expecting
our first child and of course were elated. We will never know when Hunters
condition came to start to develop. Was it predetermined in his genetics? Was
it something that happened in the following days? We will never know, and unfortunately
the doctors also do not have an answer.
By most accounts, Hunter had a fairly normal
start. He was conceived on our anniversary trip in Mexico and we found out
about him a short three weeks later. Right after we found out about him, as a
family we did endure an immense amount of stress, losing my husband mother, but
our Doctors are fairly certain the stress sustained through these early days
did not contribute to Hunters condition. Any hints that this would not continue
as a normal pregnancy did not truly hit until the routine 20 week anatomy scan.
At Hunter’s first anatomy scan, the technician
was able to get all most all the pictures she needed and everything for the
most part looked great. My husband was ecstatic when they told us we were
having a little boy. They did note that they could not find a nasal bone, which
is a sign of Trisomy 21, Down Syndrome, and she was not able to get adequate pictures
of his heart. My doctor’s office promptly scheduled me for a follow up
ultrasound in 2 weeks’ time, in hopes that he would be in a better position to
gain pictures of both a nasal bone and of his heart. They did not give us any
indication that they were worried, and over the next two weeks I really didn’t
either.
Two weeks later arrived in a blink of an eye
and I was excited to get to see our little guy again. This ultrasound went a
lot faster due to only looking for the two specific areas. Unfortunately right
away the tech said that the stinker had not changed positions and we were going
to face the same challenges that we did in the previous ultrasound. After
trying for about 45 minutes, she finally gave up and had us meet with our
Doctor. Our doctor right away said that she did not know what to tell us. She
said that they still couldn’t find a nasal bone in the scans, and couldn’t get
a good enough picture of his heart to accurately say if something was wrong or
not, but they felt something wasn’t right. She immediately called a high risk
doctor and scheduled us for an urgent Level 2 ultrasound just 2 days later.
Friday, February 28th was one of the
longest of my husbands and my life. The high risk specialist that we had to see
is a 1 ½ hour drive, if you do not hit any traffic. Our appointment was at
8:30, so we woke up at 5:00 am to start our day for our appointment.
Once we arrived at the high risk appointment,
they immediately took me in for the ultrasound. I could tell right away the
difference in equipment. The blury images were no more and we could clearly see
all of his body parts and make everything out perfectly. They confirmed that we
were expecting a little boy, after toying with us for a minute and about giving
me a heart attack, and continued to evaluate the rest of him. When they got to
his heart and face, the tech had a lot of issues. He still wasn’t in a great
position for them to capture the images they wanted. After 3 different techs
they finally called it and called the doctor in to give it a try and look at
the images. After about another 15 minutes the doctor let me up from the
ultrasound table and proceeded to tell us what she believed to be the findings.
On the ultrasound, they were still not able to
find a nose bone, once again indicating the possibility of Down Syndrome. We
did not have any genetic testing done prior to this appointment, due to being
low risk and having our general care physician caution us against it. For us
this possibility was hard to hear alone and confirming that this was a very
real possibility was hard, but then she continued. Not only could they not find
the nasal bone, but they noticed a very serious heart deformity, and would be
contacting a fetal cardiologist specialist immediately for an urgent referral
as well as wanted us to meet with their genetic specialist right away to
discuss the possibilities.
The genetic specialist encouraged us to do an
amniocentesis that day to test for Down Syndrome and take a look
at all of Hunters chromosomes. With the heart issue, we decided that we wanted
to know everything we would possibly be dealing with when he arrived to better
prepare, and decided the risks were worth it and asked them to do the test.
They were able to do the amniocentesis right
away. For those that might be considering this test, it truly did not hurt, and
for us personally, the benefits outweighed the risks. After the test, our
physician let us know that we had an appointment for 1 pm at the fetal
cardiologists at Children’s Hospital to perform an echo-cardiogram and find out
what we were all facing.
All the people we encountered that day were loving
and took amazing care of us, but Children’s Hospital right away was amazing to
work with. They called us on our way to the appointment, let us know of some
close food places due to them knowing how long of a day we had already had, and
made sure that we had the best directions to their location, entrance, and a
personal phone number for one of the nurses in case we had any questions on our
way.
When we arrived they took us right back to the
room and preformed the echocardiogram to see what was going on. The tech
mentioned that they would not be talking much and since she was trying to focus
and get the best shots possible of his heart, but a team was reviewing the
footage live as she was doing it and would be meeting with us after to go over
the findings. At the end of the echocardiogram, the tech said she needed to go
speak with the cardiologist to make sure they had gotten all the images they
needed. When a different nurse came to get us, have me clean up, and told us
she would be taking us to a more comfortable room to talk, I knew it wasn’t
good news. They do not take you to comfortable rooms to deliver good news, only
bad.
A team of 3 people came in and told us they
would just get down to it. Our little man had a very serious and very rare
condition known as Tetralogy of Fallot. They started to go over a normal child’s
heart, then started to show us what our little man’s heart looked like and how
it functioned.
At this point in time, my mind had decided to
start zoning out, and I honestly do not remember exactly how the conversation
went. They let us know that this condition is often related to a chromosomal abnormality
such as Down Syndrome and were happy that we had done the amnio test to get
further information. They let us know that our little guy, after he was born
would have to undergo an open heart surgery right away, and this first surgery
would not fix the issue, but would support him until he was strong enough to
withstand the more major open heart surgery. They told us that the only
hospital in our area that that he can be born at is their facility at Children’s
Hospital, and that we should plan to be there for 2 to 3 months with him. 3 of
those weeks are prior to his birth since we live so far away they want us to relocate
to their area to ensure that he is born there, 1 to 2 weeks following his birth
and the first surgery, and 1 month following his second surgery.
The rest of the day is a blur and honestly that
entire weekend is a blur discussing between my husband and I what we were going
to do.
Monday came around and early that day I received
a phone call from the genetic specialist. He let us know that the genetics came
back and looked great. Our little man did not test positive for any Trisomy 21
and was negative for Down Syndrome. We had never had such great news. One issue
seemed much more manageable then dealing with two life changing issues.
It has now been 1 ½ weeks full of lots of
googling, speaking with the physicians, and trying to come up with a plan. We
have been letting those around us know what we will be going through and trying
to seek support through this challenging time. Our next step is to meet again
with Children’s Hospital and explore what the next steps with them will be. Our
next appointment is April 3rd, coincidentally also my 31st birthday.
Please continue to pray for our little man,
Hunter, and maybe God will continue to bless us with miracles.
Comments
Post a Comment