The doctor informed me that it is most likely repairable with after birth surgery, which will be done at UCSF. She is confident in the surgical team there and will also work closely with our pediatrician, whom she already knows well.
Upon our introductions, she asked me what I already knew about this
condition. I told her everything I have learned over the past week
(which of course via the internet is a lot!) and that the Genetics
Counselor also made mention of the cysts the baby has in her brain.
I was taken aback when she said that the Counselor told her that she
was concerned about Trisomy 18. I knew that was something to be
considered, but to hear that she was actually concerned about it
scared me. I have been in contact with the Counselor and she told me
that according to the ultrasound the baby doesn't have the other
traditional "markers" or "soft markers" for this chromosomal defect.
These things typically include severe malformations of the
hands/feet, head, face and inner organs not to mention sever mental
retardation. The most devastating facet of this disorder is that the
life expectancy for these babies is 12-18 months. This is what the
first doctor had meant when she said that there was another
disorder 'more significant' than Down's Syndrome.
Things that we are able to "check off" the long list of Trisomy 18
conditions (also called Edward's Syndrome) are: no spina bifida, all
vertebrae are aligned and accounted for, no cleft pallet/lip, no
kidney problems (at least in utero) and her hand and leg movements
are good. I guess that a typical marker is decreased fetal movement
and a drawn up nature of arms and legs, but Charlotte seems to be as
feisty as her siblings! According to ultrasound, her head is also
shaped normally and the cysts are not applying pressure or hindering
her growth or development. At my next Level II ultrasound the
doctor's will be checking to see if the cysts are shrinking, or if
it is actually one giant cyst that is spanning across both sides of
her brain instead of 2 large ones like they initially thought. The
Counselor says that no new symptoms will show up (if she doesn`t
have spina bifida she won`t "get it"), but there may be more visible
signs as the baby grows.
The final words that the Doctor said to me at the conclusion of our
appointment however, have resonated within me. She had to inform me
that if, in fact, the baby does have Trisomy 18, there "isn't a
surgeon in the country that would perform surgery, because the
other problems with these kinds of babies outweighs the benefits of
the surgery". So basically, they would send us home with our sick
baby and only manage her symptoms, but not work towards a recovery.
As I'm sure you can imagine, I have been a little weepy since then.
I am trying to keep my chin up and trust in the Lord, but this is
really stretching me. James 4:8 promises that if I draw near to the
Lord, He will draw near to me. I have felt His presence throughout
all of this, but I do sometimes feel so alone.
Testing for Trisomy 18 won't be until after Charlotte is born, taken
from her blood, and the results can take up to 2 weeks to get back.
The Cardiologist also expects that the baby will be in the hospital
longer than average, at maybe 2 weeks (or more depending on her
health) to be on medication to help her heart valve to stay open.
This presents a tangible challenge as that we will have to
coordinate babysitters for the boys and arrange for hotel stays and
things like that in both Sacramento, where she will be delivered and
San Francisco, where she will have her surgery. It seems surreal,
but for those of you who know me well, I do worry about these things
as I want to plan and be prepared. That seems to be the crux of this
situation, for me at least. I am so intimately involved in this, but
so completely out of any kind of control. All I can do is truly wait
on the Lord to move.
"...I will trust in the mercy of God forever and ever, I will praise
You forever because You have done it. And in the presence of Your
saints I will wait on your name, for it is good." Psalms 52:8-9
I was talking to a friend a couple of days ago and realized what a
privilege this is for me to be in this situation. It is the hardest
thing I have ever had to deal with by far, but to be in a position
to see the glory of God coming is exciting. Of course I would rather
not have to be hurting, I am human and this is my baby girl,
but "God has not given us a spirit of fear, but of power and LOVE
and a sound mind. II Tim 1:7" I'm sure there are some of you reading
that must think I have gone crazy, but I haven't. I am doing the
only thing I can do right now and that is cling to God's promises.
Every day this baby grows inside me and is healthy where she is.
In that, I still ask that you, our friends and family continue to
pray, as that is the only thing that can be done at this point. I
have a while left in this pregnancy and I want to rejoice in it. I
am praying not only for healing, but for a complete miracle. It is
not too small for God to do and He wants us to believe in His might
and power, however he chooses to show it.
Thank you for your calls and emails, I have read ALL of them and I
can not tell you how they touch me. Brian is dealing with all of
this by staying totally busy with work. He is being sensitive and
tender to me and I am very thankful for that. I hope that no one is
taking it personally that we haven't returned phone calls too much.
We are just taking it very slowly. It's emotionally draining to
explain things again and again. Airenne is concerned but looking
forward to school starting as it will help her take her mind off of
it. Zach and Ty put their chubby little hands on my belly and pray
to "take away baby Char-wit's ow-ies." It's really cute.
So anyway, I apologize f these emails are long, but it is
therapeutic for me to write it out. I sincerely thank you for all of
the love given and for the offers of help.
I will keep things updated as I will see the Doc again in 3 weeks.