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"My Baby Was Diagnosed with Full Trisomy 18" | Edward's Syndrome | Life-limiting Pregnancy Diagnosis

"Jace is our first baby. He was full Trisomy 18. I had preeclampsia and he had to be delivered at 29 weeks. We had three beautiful hours with him and loved him in every way. Knowing he might not make it ahead of time did not make it easier.."

We are glad you are here. You may be here because you or someone you love received this diagnosis. Together, we will learn what Trisomy 18 is and what the impact could be on an unborn baby.

What is Trisomy 18?

Trisomy 18 is also known as Edward's Syndrome. It's a genetic disorder with extra 18th chromosomes that can cause a wide variety of birth defects in the developing baby - in the mother’s womb and after birth. Similarly to down syndrome, how it can range from mildly to severely affected, the same is true for babies with Trisomy 18.

There are 3 types of Trisomy 18:

  1. Full Trisomy 18: The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby’s body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.

  2. Partial Trisomy 18: Partial trisomies are very rare. They occur when only part of an extra chromosome is present. Some partial Trisomy 18 syndromes may be caused by hereditary factors. Very rarely, a piece of chromosome 18 becomes attached to another chromosome before or after conception. Affected people have two copies of chromosome 18, plus a “partial” piece of extra material from chromosome 18.

  3. Mosaic Trisomy 18: Mosaic trisomy is also very rare. It occurs when the extra chromosome is present in some (but not all) of the cells of the body. Like full Trisomy 18, mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division.

Full Trisomy 18 newborn baby at 29 weeks

Some common problems with Trisomy 18 can include:

  • Heart defects:

    • Ventricular Septal Defect: a hole between the lower chambers of the heart

    • Atrial Septal Defect: a hole between the upper chambers of the heart

    • Coarctation of the aorta: a narrowing of the exit vessel from the heart

  • Kidney problems

  • Part of the intestinal tract is outside the stomach

  • The esophagus doesn’t connect to the stomach

  • Excess amniotic fluid

  • Clenched hands

  • Pocket of fluid on the brain

  • Rocker bottom feet

  • Delayed growth

  • Small jaw or head

  • Low-set ears

  • Strawberry-shaped head

  • Severe developmental delays

  • Umbilical or inguinal hernia

However, each child has their own unique profile of how Trisomy 18 affects them. While there are different types of Trisomy 18, it doesn't mean one is better than another. With each type, there presents a range of possibilities. Some babies are medically fragile while others thrive; some children walk while others are confined to a wheelchair. Unfortunately, most studies show low survival rates for babies with Trisomy 18 before or shortly after birth.

Three Resources for Life-limiting Pregnancy Diagnosis:

  1. Abel Speaks: supports families who have chosen to carry a child with a life limiting diagnosis. They offer mentoring for couples. medical connections, maternity and birth photography, community retreats, commemorative keepsakes, and a celebration of life.

  2. Labor of Hope: provides support for complicated pregnancies. They offer professional doula services, birth photography, birth and hospital preparation, and continued connection after your baby is born.

  3. Mother of Wilde: creates beautiful, remembrance prints to honor your baby. We offer custom memorials for pregnancy and infant loss.

These three faith-based ministries offer great ongoing support and resources to bereaved families that have lost a baby. If you need prayer or have any questions, please reach out to our team here.

Birth print for trisomy 18 baby

newborn memorial print

Mother of Wilde is a faith-based company with a vision to spread hope and point bereaved families to Jesus. In July 2021, husband and wife collaboration, decide to connect the loss of their son with their purpose. After much prayer, Mother of Wilde was born with a mission of creating custom baby memorials and giving back to bereaved parents.


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