“Every baby is a blessing” gets put to the test when, at a routine sonogram, a baby is diagnosed with a life-limiting condition.  The news changes the dynamic of your pregnancy, your family life, and your thinking forever.  This is where my family and I found ourselves on October 1, 2019, at the 20-week sonogram for our seventh child to be born.  Baby count at that time was 6 born, 1 in the womb, and 3 lost by miscarriage.  In that sonogram room, with my husband and all 6 kids present, the doctor informed us she saw signs of chromosomal abnormality, possibly Trisomy 18 or 13, and her recommendations were termination or comfort care.  Even when we clearly stated we planned to continue the pregnancy and asked about treatment options, the doctor was gloom and doom, stating the baby couldn’t possibly be strong enough for treatment, and again offered termination or comfort care.  My husband, Andrew, told the doctor, “We don’t kill our kids,” and we left that doctor’s visit lost and confused without hope from the medical staff.  We didn’t even know if the baby was a boy or a girl because the baby had been shy.  It wasn’t until an amniocentesis two weeks later that we learned we had a daughter.  We named her Gemma Gianna Perpetua Smith.  Several days later the test results confirmed she had Trisomy 18.

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Every family deserves the option of hope.  Their baby is a blessing.  They may be blindsided by the new direction their pregnancy is taking, and they need the opportunity to grieve the pregnancy and baby they thought they had and lean into the pregnancy and learn to love the baby that they have been blessed with.  The news of a life-limiting condition for your youngest family member is a traumatic moment for a family.  Human dignity calls us to love and support the family in and through that moment. 

 

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Our experience with Gemma, from diagnosis to delivery, was my motivation for involvement with the Texas 89th legislative session, in particular HB 37 and SB 1233.  HB 37, Everly’s Law, provides training and grants to hospitals so they can provide bereavement services and cooling devices to families that experience a stillbirth or newborn infant loss.   This bill was an opportunity to work across the aisle and unite for the good of families experiencing the unimaginable.  Many hospitals have excellent services available, which was true for us when we lost our Gemma just 28 hours after delivery.  Everly’s Law will ensure that all hospitals are equipped and ready to serve families in need.

 

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The greatest impact is made when families receive support and resources as early as possible.  This is where SB1233 makes its mark.  When Gemma was diagnosed with a chromosomal abnormality at her 20-week sonogram, we were left alone with no hope and no resources.  Thankfully, my involvement in the pro-life movement had made me aware of the support group Be Not Afraid.  At the time, they partnered directly with families, and they walked us through our pregnancy, preparing us for all possible outcomes, and helped us find life-affirming support medically and emotionally.  Currently, they have transitioned from direct care to training organizations to provide that quality of support at the local level.  I can’t imagine our journey with Gemma without the support we received from Be Not Afraid.  Every family deserves that kind of support, or at least the knowledge that support exists.  SB 1233 requires health care providers to provide, at the time of diagnosis of a life-threatening or life-limiting illness or medical condition, perinatal palliative care informational materials and a list of perinatal palliative care providers and programs available locally or remotely from out of state.   This is HUGE.  Instead of being lost in the darkness, without hope or the knowledge of options, mothers and families will go home with a list of supportive services.  Because Texas is a Pro-Life state, this list will not include abortion or abortion providers.  I cry just thinking of how this glimmer of hope can impact a family amid the darkness of the news of a diagnosis. 

 

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But wait, there is more… collaborating with Texas Alliance for Life, we visited the bill author, Senator Kelly Hancock, and suggested, and the author accepted, life-affirming language that transformed and clarified the meaning of perinatal palliative care.  Fatal language unfairly steals hope from every diagnosis experience, and its effect is pervasive.  The original bill text spoke only of the diagnosis of life-threatening disabilities, and the resources offered were focused on the possible death of the child.  That perspective sets up the expectation that the baby will die and assumes no hope.  It speaks the language of hospice care instead of true palliative care.   While some conditions are fatal and hospice is a beautiful and much-needed form of care, it is wrong to assume that every diagnosis fits that narrow definition.  Regarding Trisomy 13 and 18, it is important to note that the effects of the extra chromosome present themselves along a spectrum of severity.  Some babies may never make it to birth, some will be born but have critical medical challenges resulting in early death, while others’ challenges may be manageable, and while their condition is medically complex, they can thrive to the best of their ability.  Studies have revealed that when standard medical care is offered to infants with Trisomy 13 or 18, 40-60 percent are alive at age one year, and some live for years or decades.  [i]

 

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To infuse the bill language with hope, we offered the following suggestions.  First, wherever the description “life-threatening” was used, we asked them to add the phrase “life-limiting”.  This recognizes that not all conditions will result in death.  Secondly, I found the already existing Texas legal definition of palliative care, and we asked for that wording to be used in SB 1233 to define the kind of care offered to unborn babies and their families.  The existing definition of palliative care is very life-affirming.  It includes “methods of treatment or therapies that seek to cure or minimize the effects of the illness or condition”.  The bill goes on to include in palliative care “treatment options, education, informed consent, and expression of desires,” and recognizes that this hope may be offered concurrently with hospice-type care.  So, while recognizing that death is a real possibility, a family can also seek to treat and cure; a family can hope.  Informed consent is a big one, too.  If families are told all conditions are fatal and given the recommendation to “go out of state”, something recently suggested to a friend, then are they truly being informed of their options?   How can they authentically give consent when so much information is being withheld?

 

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SB1233, and the life-affirming language it contains, ensures families receiving a life-limiting diagnosis for their unborn child also receive Hope in the form of a list of supportive perinatal palliative care resources.  There is much that needs to be done to educate society, families, and the medical community regarding life-affirming care.  SB1233 sets the foundation recognizing every baby is a blessing, and hope is always an option.

 

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St. Gemma Gianna Perpetua Pray for Us.

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[i] Martin J. McCaffrey, MD, “The Proper Catholic and Pro-Life Response to Life Limiting Anomalies: Moving Beyond Perinatal Hospice,” Ethics & Medics, Volume 49 Number 12 (December 2024): p1, https://www.pdcnet.org/em/content/em_2024_0049_0012_0001_0004

 

SB1233 bill text can be found at https://capitol.texas.gov/tlodocs/89R/billtext/pdf/SB01233F.pdf#navpanes=0

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