Pregnancy and Parenting Features

Heart Breaking Letter from a Mother

12 November 1998

Dear Vickie at Labor of Love:

There is so much to say that I do not know where to start. I am writing to you in hopes of spreading the word to your readers. On August 17, our beautiful daughter Amanda was born. About an hour later, Amanda died. This is very difficult for me to write, but I feel, for her sake as well as the possibility of preventing another family from going through what we did, I must.

I have the best ObGyn in all the state, extremely cautious; mother and baby always come first. I also was set to deliver at the best hospital in the state. If there were any complications during delivery for mother or baby, they had it all. We felt very at ease with everything.

My due date was September 7, Labor Day. Late night on August 16th, my water broke like a dam. It is important here to point out I have absolutely no medical background and always trust the person in that white jacket. This is a mistake I will live with the rest of my life.

The resident doctor on hand that night when we went in did an ultra sound on me as a usual step in preparing for delivery. In scanning, she came across a large image on the screen that was two long parallel lines. She commented on the fact that I had a "lot of chord". I questioned what I also saw by saying it didn't look like chord. That was the end of that conversation. I didn't pursue my question; never for a second thinking there could be something growing inside me or on my baby. My thought was that she's the doctor and she knows everything. Well, she didn't. Apparently residents are not trained to fully read an ultrasound image. Their job is to check and make sure the head is in the right position and to check for fluid. She should have listened to my concern and at least called in a second opinion. As I put her up on that pedestal for wearing the white jacket, she too was in error for not listening to me, as I was only the patient.

Even with this, however, there are no hard feeling toward her. In fact, I really feel sorry for her and feel she will never let ego get in the way of her job again. That was probably the last chance Amanda had for life. What was missed on that ultrasound was a benign tumor, a sacrococcygeal teratoma.

My labor was quick and easy until what was thought to be my last push was not. The tumor, a sacrococcygeal teratoma, was on her rump and was about 10x9x9 centimeters, roughly the size of her head. Still not knowing why she was stuck, I pushed they pulled . She was caught up by this growth for less than 5 minutes.

Because sacrococcygeal teratomas are so rare, they are not specifically looked for on any ultrasounds. I did have an amniocentesis test, along with an extremely thorough ultrasound at 17 weeks. And in going back over those tapes, the tumor had not even begun to grow.

When she got stuck, she was too far out to do a cesarean section. When she was delivered, she had been so traumatized that her Apgar ratings were very poor: 1 and then 2. It is thought that the tumor must have torn slightly during delivery, and this caused her weak condition. As they tried to move her, the tumor tore larger. They worked extensively for over an hour trying to save our Amanda. Since they could not stop or control the bleeding from the approximate 5x2 centimeter tear their efforts were in vain.

This is what we now know about this tumor called sacrococcygeal teratoma: They are very rare, about one in 40,000 live births. They are more commonly seen in females. They can grow very large but are usually benign. Ultrasonography in the second and third trimester is very important in its management. It is recommended any fetus with lesions larger than five centimeters be delivered by cesarean section to avoid a traumatic delivery. In most cases where the baby is delivered vaginally, they die. This type of tumor is very fast growing, although no one knows why they occur. Doctors do not look for this, as it is so unlikely to happen to you. Insurance companies pressure the doctors not to do ultrasounds, as they are too costly. Doctors are not gods; they do not know it all, and we need to exercise our right to question them. There is nothing like a motherís instinct.

I hope you can pass this on to your readers somehow.

Sincerely,
Juli M Tsang

iliaina@cchono.com
Kailua Hi



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