[tri-med] trisomy 18, omphalocele / trisomy 13 omphalocele

Joel & Becky,
My name is Wendy and I am carrying "Faith", our first child. I am in due on
January 19, 2003. Faith has Trisomy 13 with an omphalocele, atrial septal
defect of the heart & cleft lip. We found out at our 20 week ultrasound and
then confirmed with an amnio. I am going to attach 3 emails that I have sen=
t
out to friends and family that will kind of explain our situation and a
little of who we are. Maybe it can help you? Right now my husband and I
disagree about what kind of care she should have. I want comfort care and m=
y
husband wants her to be treated like a normal baby in terms of
resuscitation, surgeries, etc. The neonatalogists told us that she could no=
t
survive for very long with the omphalocele because of the loss of fluid and
risk of infection and that he is not sure if he could find a surgeon that
would perform the surgery on a Trismomy 13 baby. I will be praying for you
as you two contemplate your decisions. We are going to meet with a pastor
from our church next week to try to help us work through this resuscitation
issue. Feel free to call or email with any questions (although I am still
finding things out as well) or just to talk.
God Bless,
Wendy Hagen
Home phone 925-556-1938


I think that most of you know that Shiloh and I are expecting our first
child on January 19th. What a lot of you do not know yet is about the
findings from our 20 week ultrasound (taken on Wednesday). The doctor
discovered a large cleft in the lip, an atrial septal defect in the heart
(basically a hole) and several holes in the abdomen area. The doctor knew
right away that this was indicative of either Trisomy 13 or Trisomy 18,
which are both fatal genetic syndromes. Last night we received the results
from Wednesday's amniocentesis which confirmed that it is in fact Trisomy 1=
3
(see www.trisomy.org if you want more details). Trisomy 13 is a rare proble=
m
(in my case - 1 in 7000-10000ish) that happens as soon as the sperm and egg
unite and somehow there is an extra chromosome in the 13th pair. As far as
we know, it does not look like something that is likely to happen again nor
is there any risk to my health.

Most babies do not even make it to birth. Of the babies that are born, %90
percent die before age one. They are born with severe retardation and a
myriad of physical problems. For Shiloh and I, abortion is not an option. W=
e
know that God will give us the strength to handle whatever he brings our wa=
y
- if she dies in me or is stillborn or lives a short time. I believe that i=
f
she is really suffering God will take her to heaven. I have spoken with a
women who had a Trisomy 13 baby (Samuel) that lived for two months. He was
blind, had a feeding tube & was probably deaf. They resuscitated him 17
times (the babies often die because they just stop breathing). She said tha=
t
they loved him and made him comfortable and they would not trade their time
with him for the world. When he started being uncomfortable (his feet
started swelling and they could tell his quality of life was declining),
they did not resuscitate him and he died. If she (we found out the sex and
we named her 'Faith') makes it that far, will we choose to resuscitate even
once? I don't know. We will just take one day at a time.

Here is the good news:
1. Since the moment the Doctor started telling us the devastating news I
have strongly felt the presence of God. In the last 6 months or so, He has
been reminding me in many ways that HE IS IN CONTROL OF EVERYTHING. In Acts
17 the Bible says that he has determined the times set for us and even the
places that we should live! In God we live and move and have our being. Up
until now, I did not have a significant application of this because
everything was going quite well. But now I know that he was preparing me fo=
r
the uncertainty of what lies ahead. God knows how long Faith will make it
and he will take care of her and Shiloh and I.

2. Philippians 4:6,7 read "Do not be anxious about anything but in
everything, by prayer and petition, with thanksgiving, present your request=
s
to God. And the peace of God, which transcends all understanding, will guar=
d
your hearts and your minds in Christ Jesus."
I have this peace that passes all understanding! I cannot even believe the
peace that God has given me to face this situation. Don't get me wrong, thi=
s
is a tragic situation and I have shed many tears. I also know that I will
have moments and days where I will feel very down and perhaps even be angry
with God. But for now I have an incredible sense of calm and peace that can
only be from God and all the prayers of his people. So I really do
appreciate the literally thousands of people that have already been praying
for us. In addition, I actually feel honored (I know it sounds crazy) that
God chose us out of 7000-10,000 people to be the ones to go through this. H=
e
knew that we could handle this and perhaps point others toward Him. He love=
s
us. He knows us. He sustains us.

3. We have a wonderful support system. We went to our small group Bible
Study on Wednesday night (the day we found out) and they completely shifted
what we were doing to support us and lift us up in prayer. My family is
devastated but have offered so much support. Although in Southern
California, Shiloh's family have extended their prayers, love and concern.
Shiloh's brother Caleb is driving up here as I write this just for the day
to hang out with us. My Mom's friends have brought us dinners. Friends have
offered to drop everything to do anything to help us.

4. Shiloh and I are closer than ever. I know that something like this can b=
e
very damaging to a marriage. In our case, we are clinging to one another.
Although we deal with it all differently, (I am researching and talking to =
a
lot of people - Shiloh has only called a few people) we very much support
each other - even in the way we are coping differently. Shiloh's faith is
strong and he too knows that God is in charge.

Where do we go from here? We meet with the genetic counselor on Monday
morning for further counseling. We will also talk to my regular OBGYN and
see if I will go to a different doctor for high-risk pregnancies. We will
also then find out how often I will go, etc.

Thank you so much for all your love, support & prayers. Know that God is
working in us and giving us strength to endure.

"In this you greatly rejoice, though now for a little while you may have ha=
d
to suffer grief in all kinds of trials. These have come so that your faith =
-
of greater worth than gold, which perishes even though refined by fire - ma=
y
be proved genuine and may result in praise, glory and honor when Jesus
Christ is revealed." I Peter 1:6-7

God Bless,
Wendy & Shiloh=20

The UPDATE

Dear Friends & Family,

Thank you for all your prayers and support. We appreciate all the
encouraging letters and emails.

At this point we are going to my regular OBGYN once a week to have Faith's
heartbeat checked. We had an appointment yesterday and her heart sounded
fine. I can feel her move (somewhere between the butterflies and a kick) so
I can kind of monitor if she is still alive or not. Yesterday was the
beginning of week 23.

We got our "official" amnio results yesterday where they sampled more cells
and again confirmed Trisomy 13. The good news is that this was not a result
of a translocation (my understanding is that you have the right amount of
chromosomes, but they are out of order and are thus more likely to produce =
a
baby with a chromosome problem) so it is not a hereditary problem. However,
the likelihood of having a baby with a chromosomal problem again (simply
because it happened to us once) at this stage in the pregnancy is now 1 in
100, which is the same as a 36 year old women. Not too bad. I always felt I
was mature for my age. Ha.

God is continuing to sustain us and strengthen us daily. The peace that we
have can only be from Him. God's word is so refreshing to us and has come
alive to me more than ever. Please continue to pray as we get more attached
to Faith each day.=20

Many of you have asked how you can help or support us. The most encouraging
and uplifting thing for us would be if you would seek to know God. Talk to
Him. Read the Bible. Ask us questions about Him. And any of you are welcome
to join us for church on Sundays. We want you to know this God we serve who
loves and daily blesses us with His presence, comfort and peace even in the
midst of such a tragedy.

God Bless You,

Wendy (& Shiloh)

"Know that the Lord Himself is God; It is he who has made us, and not we
ourselves; We are the people of His pasture." Psalm 100:3

"When I said, 'My foot is slipping,' your love O Lord, supported me. When
anxiety was great within me, your consolation brought joy to my soul." Psal=
m
94:18



Dear friends, family (and even some strangers!),

Things are pretty much status quo as far as Faith is concerned. She is stil=
l
moving & kicking inside of me. Thus, we are only going to my doctor once a
month, like normal pregnancy.

Shiloh and I did meet with a neonatalogist, Dr. Murphy, recently. He works
at John Muir hospital in Walnut Creek (where we will deliver) and Children'=
s
Hospital in Oakland. In his 25 year career, he has seen 6-12 cases of
Trisomy 13. He was very compassionate and informative and we appreciate the
time he spent with us as we try to prepare for the road ahead. He talked to
us about comfort care (making her as comfortable as possible for however
long she lives) vs. more aggressive resuscitation (intubation for breathing=
,
intravenous medication, surgery on her stomach etc.). It is important for
Shiloh and I to decide which level of care we would like Faith to have
before she is born and at this point Shiloh and I disagree. So that is our
big prayer request. Pray that God would show us what he wants for Faith. We
plan on having another Level 2 ultrasound at the end of November to monitor
the state of her known existing problems and see if there is anything else
that we can prepare for.

Physically, I feel good. I am still exercising and working. Emotionally, Go=
d
is taking care of me everyday. Of course, I have had some down times, but
overall God is really pouring out His peace on me. Shiloh is still keeping
to himself and busying himself with the latest home electronic project.
That's all for now.
God Bless,
Wendy=20
=20

=20


On 10=8029=8002 3:39PM, "jobelkc@xxxxxxx" <jobelkc@xxxxxxx> wrote:

>=20
> Hello,=20
>=20
> My name is Joel and my wife is Becky.  We have three children
> ages 8, 6, 3.  We are expecting the fourth girl on January 4, 2003.
>=20
> The pregnancy is at 29 weeks, diagnosed with an omphalocele.
> The genetic testing shows a full trisomy 18.
>=20
> We decided to carry the baby to term, although my wife usually has big ba=
bies,
> and we will probably induce a week early.  The pregnancy is being managed=
 with
> my wife's health in mind.  On delivery, the doctors are recommending "com=
fort
> care" for the baby.  Any suggestions, recommendations, or words of wisdom
> would be appreciated.
>=20
> Thanks.
>=20
>=20
>=20
>                 Building ___ooOOoo__ Rainbows
>                      www.trisomyonline.org
>                 Families Helping Families On-line
>=20

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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