NOTE: Video can be accessed in our community course hosting platform; not available here
Your care plan is 100% unique.
But this truth is universal: no pregnant mother should be alone with the news of a fetal anomaly.
Despite the fact that the she did not cause the anomaly, and she cannot change what already happened, she will feel like she is carrying a burden that is too heavy without help.
Perinatal mental health is a specialized category of mental health available to all women and families navigating conception through postpartum, and we invite you to find a specialist to best support you in this time.
Here’s a bit on what to expect in your pregnancy care plan:
Once an anomaly is suspected, your obstetrician or OBGYN will refer you to a maternal-fetal medicine (MFM) specialist.
You will also have a conversation with a genetic counselor.
Once an anomaly is suspected, you will undergo detailed ultrasound, and probably be presented with additional testing options, such as further imaging (for instance an MRI) or genetic testing.
Noninvasive prenatal testing (NIPT) or Cell-Free Fetal DNA (cfDNA) is a genetic test on the mothers blood, therefore it is NOT invasive for the fetus. This can be done as early as 10 weeks. When it is not normal, or when a structural anomaly is seen, further testing is usually advised.
High-resolution ultrasound can be done early in pregnancy to visualize some major anomalies, but is more commonly performed midway through pregnancy, at approximately 20 weeks. By this time most organs have formed and they are now large enough to be visualized accurately and analyzed for abnormalities. It is the ideal time to see the entire baby all at once.
There are two methods of invasive genetic diagnosis, chorionic villus sampling (CVS, which is done between 10 and 13 weeks) and amniocentesis (typically done after 15 weeks) to look for genetic abnormalities or infection.
You may also be advised to have a fetal MRI or an echocardiogram. A fetal echo examines additional details of the baby’s heart function, and an MRI can more fully characterize certain anomalies. (Noviams)
You’ll be introduced to a fairly large team to support you and your baby:
Your MFM or OB will designate referrals to, or coordinate care with, a team of fetal specialists.
In many cases, this lives under the roof of a partnering children’s hospital. You will likely go to another building for your fetal care.
If you are under the care of a fetal care center, expect a team including:
Fetal specialists or pediatric surgeons, who may guide prenatal and postnatal therapy or surgery
A neonatologist, who’s primary focus is your newborn baby and baby’s healthcare
Your OB/MFM, who’s primary focus is the mother and her healthcare
A social worker
A nurse navigator, or primary nurse managing your appointments
You’ll be asked to make decisions on fetal care. In addition, you may be offered in-house mental health resources.
Related to decision making, your care team will help you and your family understand:
• What is known and unknown
• Possible outcomes and risks
• and your options (including continuing the pregnancy, therapy interventions, and palliative care approaches)
You should be supported emotionally, and given time to ask questions.
It’s important to note that the overwhelm of information and emotions often leave parents feeling like they retained only a small portion of the information. If you need follow-on conversations, this is absolutely normal. You are never a burden to ask more questions of your team, or to ask for another appointment.
You will be presented with decision points along your journey. Sometimes, decisions need to be made. Other times, you may be able to wait and let the pregnancy take its course. This can be very difficult. You are not alone, and there are resources to help you find counseling, answers, and support for every unique journey.
You will have:
More frequent ultrasounds, growth scans, Doppler studies (blood flow)
Monitoring of amniotic fluid, placenta, and fetal well-being
Plans for when and how the baby is delivered, based on maternal and fetal levels of risk
Sixth, some treatment plans will include fetal interventions, otherwise known as therapy or surgery.
There are about 50 centers across the country today providing specialized fetal therapy in-utero.
The delivery location will be at a hospital with neonatal and surgical capabilities, if pursuing these types of fetal care
You and your team will plan for immediate care after birth, or palliative care
Palliative care is an active, whole body care approach for infants with life-limiting or serious conditions. It focuses on quality of life by managing symptoms like pain, providing emotional and spiritual support to the family, and helping with decision-making during pregnancy, birth, and throughout the child's life. Palliative care can be done alongside of surgical care, or can stand alone, depending on the anomaly’s severity, and your unique circumstances.
After birth, pediatricians, surgeons, therapists, and other specialists will care for the baby
Interventions or therapies may be part of the long-term plans
Support services for you and your family should absolutely be a part of your long-term plan, as well
Data shows that most perinatal depression or anxiety in fetal center parents appears 10-20 weeks after birth or surgery, meaning we must expect and plan for needed support postpartum, for 1-2+ years to come