Cuyahoga Falls, Ohio (OH)

Photos taken by Amy Cameron of At That Moment Photography
Photographer found through Now I Lay Me Down to Sleep
 

August 5th

Hello,
 
I wanted to let everyone know that Anna Louise Schrag was born at 11:29am on Thursday, August 2nd.  She weighed 5 pounds 3 ounces and was 19 inches long.

Over the next 88 minutes she was held by only Sarah and I.  Anna also met all four grandparents, her sister Marie, and her Aunt Elaine.  She was baptized by our priest and was the star of a photo shoot.  At 12:57pm, she passed away.

It has been a rough road and we are still in the midst of it.  Your thoughts and prayers are appreciated.

Our experience at the hospital was as positive as could be, given the circumstances.  The nurses at
Akron General Hospital were amazing.  Nurse Wendy was calming and caring as she stayed with us throughout the night before labor.  Nurse Amy went out of her way to do everything possible for us and make our time with Anna special.  She became emotionally involved with our family and we are thankful for her presence.

We also want to thank Dr. Stewart and his team of nurses for their care throughout the process. 

We will send pictures soon.

Thanks,
Dan

- - - -

Update: 7-24-2007

Hello,

We just wanted to check in and let everyone know that Sarah is scheduled to be induced on the morning of Thursday, August 2nd. Anna's growth has slowed
considerably.

Since our last post, we have met with a case manager at the Fetal Treatment Center in Akron, as well as a Neonatologist and a third visit to the Pediatric
Cardiologist. (and weekly visits to the high-risk OB).

Our plan is to hold and be with Anna as much as possible, and to make her comfortable as long as she is with us.

Here is a family picture from Amy Cameron of "Now I Lay Me Down to Sleep". Amy was kind enough to meet us for a maternity session. And we plan on having her
there to take pictures of Anna. Amy's site is www.atthatmomentphotography.com

Thanks,
Dan and Sarah
 

6-14-07

Hello -
This website has helped us cope with the diagnosis of Trisomy 13 in our daughter Anna Louise. We thought we would share our story. Currently, my wife is approaching 31 weeks. Below are two emails that we sent out to family and friends a few months back to announce and explain everything. Since the March emails, we have had regular visits and ultrasounds, including echocardiograms from a pediatric cardiologist to pinpoint Anna's heart issues. Given her heart, life expectancy is very short. We are just hoping for some time. Attached is a picture of Sarah and Marie, our 1 year-old daughter.
Thanks,
Dan and Sarah Schrag
danschrag@yahoo.com
Cuyahoga Falls, Ohio


Monday, March 26, 2007,
All -

This is not easy. I apologize for the medium...but this is too hard to go through via phone conversations with so many people.

Last Friday (March 23rd), Sarah had her routine 19-week ultrasound. We first found out that our baby is a girl. And her name is Anna. Next we learned that her umbilical cord has 2 vessels, while a normal one has 3. We were told that this, by itself, is not
horrible. We were then informed that she has a cleft lip/palate. Finally, a second technician and mid-wife came in and it was decided that she has an "abnormal heart" or "heart defect." We were scheduled to meet with a high-risk doctor for a more thorough examination on Monday.

Armed with only this information....the weekend was pretty miserable.

Earlier this afternoon (Monday, March 26), we met with the high-risk doctor and he used the latest, high-powered ultrasound machine. This is where things get worse. He noted the bi-lateral (both sides) cleft lip/palate, a chin that seems pushed in, ears that seem low on the head, hands that only make a clasped thumbs-up position, feet that do not seem normal, and also the heart. The heart is bad and more complicated than I can describe.

Overall, the doctor thinks that there is a chromosome problem. Not to get too scientific, but humans have 46 chromosomes, 23 pairs...Anna likely has 47. The three most common issues are having 3 of chromosome #13, #18 or #21. This is called Trisomy 13, 18 and 21 respectively. The first two are fatal. Either the baby dies before birth (stillborn) or dies within 3 months of birth. Number 21 is Downs Syndrome. If other chromosome numbers are the problem, then a different named syndrome would be present and this would be more rare. The doctor seems to be leaning toward her having #18....but a test of the amniotic fluid (retrieved via a amniocentesis)...will confirm if and the type of chromosomal defect she has. These test results will come within days.

Bottom Line -

Anna will either not make it through the pregnancy or make it through and then pass away shortly after birth. Or she will undergo several serious open heart surgeries upon birth and still have questionable chances for life and handicaps..

We have decided to let life run its course and only intervene if there is risk to Sarah's health.

We are dealing with this as best we can. Again, telling the story is difficult and we are not really ready for visits or cheer-ups. Its one day at a time.

I will update you when more concrete knowledge is available. Thanks in advance for your concern.

Thanks,
Dan and Sarah


March 29, 2007
All -

This afternoon (Thursday) we received the results of the chromosome test. The tests showed that Anna has Trisomy 13. Defined here:

"Trisomy 13 is a syndrome associated with the presence of a third (extra) number 13 chromosome. Trisomy 13 occurs in about 1 out of every 5,000 live births. It is a syndrome with multiple abnormalities, many of which are not compatible with
life. "

Our doctor mentioned an average life after birth of 6 months. There are also figures and stats on various medical websites. "More than 80% of children with trisomy 13 die in the first month." Though there is also a high chance of the pregnancy not making it to birth.

We are coping...or trying to cope, as it may be. Your thoughts and prayers are appreciated.

Dan and Sarah
<danschrag@yahoo.com>