Decisions after a positive diagnosis

For people who choose to continue a diagnosed pregnancy, prenatal screening and/or diagnosis provide the possibility of preparing for the birth of a child with Down syndrome or another condition. Such preparation may include medical aspects and day-to-day aspects.

Medical aspects

Before outlining the medical aspects, it is important to note that not all pregnancies with Down syndrome have medical complications that require interventions shortly after birth. Still, babies with Down syndrome are more likely than other babies to have certain medical issues.

Miscarriage occurs more often in pregnancies where the fetus has a genetic condition than in other pregnancies. Such pregnancies are also more likely to be complicated by problems such as growth restriction (when the fetus grows more slowly than it should inside the womb). Therefore, when there is a positive prenatal diagnosis, the pregnancy may be monitored more closely.

Babies born with Down syndrome are more likely than most babies to have some health problems that cause complications at birth or soon after, such as heart defects or intestinal (gut) obstruction. Therefore, women carrying a fetus with Down syndrome are offered extra follow-up services and some extra precautions at birth. For instance:

• • • One or more extra prenatal ultrasound scans may be offered to find any abnormalities in organs (such as heart defect or gut obstruction) or growth restriction.
    • If an abnormality in an organ is detected, the choice of hospital for delivery is discussed. Health care practitioners may recommend a specialized center as opposed to a home birth, birthing homes or community hospitals. 
    • In case of a growth restriction, labor may need to be induced before the 39^th week.
    • After birth, the baby may receive more attention from medical specialists, and might be kept in the hospital a little longer than after a typical birth, before being discharged home.

The precautions listed above may be suggested or recommended by health care providers. However, there may be differences in follow-up depending on providers, centers, regions, and more importantly, individual situations.

Emotional aspects

• • • Having a baby with Down syndrome is not something most people expect when they decide to have a child. A prenatal diagnosis of Down syndrome often comes as a surprise and people may have various needs and strategies to adapt to this new reality.
    • People may seek counseling or emotional support, not only to help them in their decision-making, but also after their decision is made. Many grieve the “typical” child they had expected. It may be difficult to imagine the life of a person with Down syndrome and one own’s life as a parent of a child with Down syndrome. Coming to terms with the fact that their child will have Down syndrome may require a period of adjustment. It is normal to go through a range of emotions, including negative ones.
    • The family may want to meet with other families living with Down syndrome. This helps to get a concrete idea of what might be similar and different about raising a child with or without Down syndrome. Other families can also be a source of practical information on services, programs, and day-to-day living.
    • Support and advocacy groups for people with Down syndrome and their families may also be good sources of information and support. They may also provide a sense of community and belonging.
    • Some parents can have the feeling of being pregnant with a ‘diagnosis’, not a baby. It is important to remember that they are still expecting a baby who will have their own personality and the same needs as any baby. Indeed, most parents of children with Down syndrome report that they find their child more similar to most children than different.

Preparation for the day-to-day aspects of having a child with Down syndrome and possible medical complications can be reassuring for some people. However, it does not mean that it is necessary to prepare in any special way for the birth of a child with Down syndrome. In fact, many cases remain undiagnosed until birth and this does not prevent families from flourishing. Families welcome children with or without Down syndrome, with or without preparation.

1. Pregnancy termination by taking pills

In the first trimester, it is possible to end a pregnancy by taking pills. It takes a few days and it feels like a heavy period.

A first medication is given to stop fetal cells from growing and dividing, and to separate the placenta from the wall of the womb. A few days later, a second medication is given for the womb to contract and empty. The process takes a few days to complete. The termination can feel like a very heavy period. The woman may stay home during the procedure, but a follow-up appointment is required to ensure that the termination is complete to avoid complications.

In some cases, the termination is not complete (some tissue is left in the womb). In these cases, it would be necessary to perform dilatation (slight widening of the cervix) and curettage (scraping of the wall of the womb from content).

2. Vacuum aspiration and curettage

In the first trimester, a doctor can end a pregnancy in a clinic or a hospital. The doctor uses instruments to remove the fetus from the womb. It takes less than 30 minutes with 2 hours of recovery. It feels like a heavy period.

Local anesthesia is provided, and the cervix is dilated (made wider) slightly to insert a small catheter (a tube). The content of the womb is suctioned through the catheter. If necessary, a curette (surgical instrument shaped like a scoop or a spoon) can be inserted to scrape the wall of the womb from content that could not be suctioned. Forceps (and instrument with pincers) are also occasionally needed.

The procedure takes 10 to 30 minutes and causes cramping similar to menstrual cramps. Recovery takes about 2 hours. A follow-up appointment is required to ensure that the termination is complete (that all the tissue has been removed). If the first attempt is not complete, this procedure may be done a second time, or it might be necessary to perform dilation and evacuation (see below).

3. Dilation with evacuation

In the first trimester, a doctor can end a pregnancy in a clinic or a hospital. The doctor uses instruments to remove the fetus from the womb. It takes less than 30 minutes with 2 hours of recovery. It feels like a heavy period.

One or two days before the procedure, a medication is given to dilate (make wider) the cervix, and/or a small device called laminaria is inserted in the cervix to cause progressive opening (dilatation), several hours before the procedure. Laminaria are thin and are about the length of a tampon.

A few hours later, sometimes the day later, local or general anesthesia is given. Women may be conscious or unconscious for the procedure. If a woman is conscious, she receives medication for pain relief, that also creates a sensation of ‘twilight sleep’. This means that she is awake, but sleepy, and will likely not remember the procedure. This is similar to what happens during colonoscopies or minor bone fracture surgery. The content of the womb is removed by vacuum aspiration. Curette, suction or forceps are also used. The procedure takes about 10-30 minutes. Side-effects include irregular bleeding for up to two weeks after and cramps similar to menstrual cramps.

Dilatation and extraction

At week 14 to 23, doctors can end a pregnancy with a procedure called dilation and extraction.  The doctor uses instruments to remove the fetus from the womb. This method requires 2 to 3 days of preparation to open the womb.  The woman receives medication to prevent pain or to sleep during the procedure. It takes less than an hour. For the next 2 weeks, the woman may bleed and feel cramps.

Two to three days before the procedure, a medication is given to dilate (make wider) the cervix, and/or a small device called laminaria is inserted in the cervix to induce progressive opening (dilatation). Multiple luminaria may be inserted. Laminaria are thin and are about the length of a tampon. A more significant dilation is required than during first trimester procedures. This phase therefore lasts longer. 

On the second or third day, local or general anesthesia is given. Women may be asleep or awake for the procedure. If a woman is awake, she receives medication for pain relief, that also creates a sensation of ‘twilight sleep’. This means she is awake, but sleepy, and will likely not remember the procedure. This is similar to what happens during colonoscopies or minor bone fracture surgery.

With dilation and extraction, the fetus does not come out whole. It is usually not possible for parents to see and hold the fetus. An autopsy is also impossible. Some people prefer not to see the fetus. Others feel that it is an important part of grieving. This may influence the decision between dilation and extraction and labor induction. In either procedure, the fetus is sedated or an injection is used to stop its heart before the intervention. The fetus does not feel pain.

Termination by labor induction

After week 24, going into labor can be needed to terminate the pregnancy. This means that the woman gives birth. The pregnant woman feels contractions and may even produce milk later on. This kind of termination is often more difficult to cope with.

This type of abortion is done in the hospital and it takes about 2 days. Labor is caused by medication as early as possible to make it easier for the woman. The woman gives birth as she would give birth to a live baby. She can have an epidural if she wants. Pain and duration of the process depend on the size of the fetus and whether it is the woman’s first baby. It is expected to be less painful and shorter than a live birth because the fetus is typically smaller. The doctor may use an injection to stop the baby’s heart before labor.

With labor induction, the doctor may give the fetus an injection to stop the heart before labor. Other times, the fetus comes out alive and receives comfort care until it dies naturally. People may be given the choice between these options. It depends on centers, doctors and the fetus’ age. The lethal injection may be required depending on the gestational age and the center where the termination is done.

In cases where the fetus comes out alive, doctors always ensure that the baby does not feel pain. Staff is trained to support women and couples during and after the abortion.

Lactation (milk production) may occur after a second or third trimester abortion. Plans for dealing with this can be made ahead of time and may or may not include medication, depending on the woman’s desires.