I could barely understand what she was saying on the phone. Finally, her husband took the phone from her and spoke on her behalf.  “Jane Doe” had been given the all clear at her 19 week checkup and thought that everything was going fine with her pregnancy. However, a mix up at the lab confirmed that their baby had a severe heart defect along with chromosomal abnormalities.

Jane’s experience with her OB was less than stellar. Both she and her husband were recent transplants to the United States, and noted that where they come from, there is no such thing as changing doctors depending on new issues and needs—one doctor manages everything and all decisions go through that doctor. She felt, after the complex medical diagnosis, that her OB was rushing her out of the practice once it was realized that the baby would not make it to delivery and that the pregnancy would be terminated. She felt alone, isolated. Her OB gave her a phone number to call regarding what she should do next, then stepped out of the equation. He also gave Jane my phone number.

After the Testing and Diagnosis

In the state of Illinois, a pregnancy can legally be terminated under 24 weeks. Twenty-four weeks is the magic number; after that a patient looking to terminate would need to leave the state and travel elsewhere. Jane understood that time was not on her side.

Fortunately, I was able to help Jane navigate through the maze of doctors and providers who do this type of work and don’t make the patient feel even worse about their decision. Initially, Jane was not told that she had the option to have surgery where she would be put under general anesthesia. Jane’s sister had experienced a similar situation in their home country, and instead of surgery, had gone the labor-and-delivery route. The thought of having to deliver this baby was incomprehensible for Jane, especially since she already had a child at home. She also intended to have more, and did not want to associate labor with this tragedy and sadness.

Pregnancy Termination or Stillbirth Delivery?

When a poor genetic result comes in within the first 24 weeks of pregnancy, you do have options. You can have a D&E (dilation & evacuation) which is a two-day procedure, designed to preserve the cervix for future deliveries. The first day, the dilation, is an outpatient procedure and is done in a clinic. The second day, the patient is put under general anesthesia; this is done in a hospital setting. The patient can then go home if there are no complications.

The other option is to deliver the baby that is not viable in a hospital setting. Patients choose this option so they have a chance to see and hold their baby. Pictures can be taken as well. In both cases a patient has the option of a private burial or cremation.

Seeking Support After the Loss

Making the decision to end a pregnancy is heartbreaking. There are feelings of guilt, disappointment, inadequacy, failure and more. It is one of the most difficult experiences to live through. The one thing to keep in mind is that you are not alone. There is a place to go to feel safe, understood, and supported.

The Blossom Method runs one of the only pregnancy termination support groups that exists nationally. It is a support group for people who wanted their baby desperately, but due to a complex medical diagnosis and chromosomal abnormality, were encouraged to end the pregnancy. It is important to know that your decision is not a selfish or evil choice, but one that is merciful, loving and generous. You made the hard decision, knowing your baby – if surviving through birth – would live with lifelong hardships and pain, and chose a decision that would limit suffering. Your pain shouldn’t be ignored—you deserve to have all the help and support you desire. Our support groups and therapy options are there for you. If you have any questions about complex diagnoses, termination, or other complications regarding pregnancies, feel free to contact us for help at any time.