What Do I Do Now?

You have received unbearable news: Your precious baby is not going to live the long life you dreamed of. We are here to walk with you through this holy & heart-breaking time.

Regardless of what the doctor said or the test results revealed:

Your baby is a gift. 

Your baby’s life matters. 

Your baby has eternal purpose and value. 

Your baby has a mission given only to your child. 

You and your baby deserve the gift of time together. It will be heart-breaking, but it will also be beautiful.  It will last forever. 

After receiving a life-limiting or terminal diagnosis for your baby, you are faced with two painful, simultaneous paths: praying for a miracle and surrendering to the plan God has for your baby.

Receiving a life-limiting diagnosis is heart-wrenching, but it’s also an invitation to trust in God's divine plan. This requires a great deal of faith and courage, but your baby is worth it. Your baby’s life is worth the gift of time that the Lord has given him or her. You are worth receiving every grace the Lord wants to give you through this holy and heart-breaking journey with your baby.  

And So We Pray

We pray for a miracle. We pray for healing. We pray for grace. We beg and throw ourselves at the Lord’s feet and plead for mercy. Our tears pool on the floor of the Church. God hears every one of our prayers that our child be spared. That we be spared.

Our God is a God of healing and He can work miracles. He IS working miracles in your life and through your baby, but He may not allow your baby to be physically healed. “Sometimes the miracle you get is not the miracle you prayed for.” (Elizabeth Leon, Let Yourself Be Loved: Big Lessons from a Little Life) Even if the Lord is not answering your prayers in the way you want, He is still filling you with grace and hope.

We struggle to Surrender

It takes courage to surrender with no certainty of outcome. Surrendering does not mean giving up. It means allowing God's mercy to fill our hearts with peace and allowing the Lord to number our child’s days. This is brutal, beautiful, and holy work, but the Lord is faithful. We are here to walk with you during this painful journey and to remind you that you are not alone. You are seen and loved in the middle of your suffering. You are at the foot of the cross with Jesus.

“My grace is sufficient for you, for my power is made perfect in weakness.”

– 2 Corinthians 12:9

Going Deeper

  • Some medical professionals will say your child is “incompatible with life.” That is not true.  YOUR CHILD IS ALIVE and has a life-limiting diagnosis.  

    As Catholic parents, you may need to advocate for the beauty and dignity of your child’s life. Not every medical professional will approach a life-limiting diagnosis this way, but you deserve to have a care team that supports your belief that your baby’s life has purpose and value, no matter how brief.  

    The journey through a medically complicated pregnancy with a baby with a life-limiting diagnosis is not easy, but it is WORTH IT.  Your baby is a gift from God and His grace will sustain you.  

    You can find additional support by connecting with Perinatal Hospice and a Bereavement Doula. 

    Click here to read an essay on “Why it is Worth It.”

  • Though the time with your child may be brief, it is precious and a gift from God. Embracing this gift of time can bring moments of grace, joy, and deep connection. Whether it’s cherishing the days of pregnancy, preparing for birth, or planning for farewell, each step is an opportunity to celebrate the life God has entrusted to you. 

    Talk with your spouse about how you can celebrate your baby while he or she is still in your womb.  Take pregnancy photos.  If possible, travel to destinations or local venues you would have liked to take your baby and take more photos.  While you may not choose to have a traditional baby shower, you can still celebrate your baby’s life with a gathering.  Consider having guests bring books inscribed to your baby for a Memorial Shelf or a special charm to create a bracelet. Order a Christmas stocking or special ornament.   

    Your baby is and always will be a part of your family. Although emotionally difficult, it is a transformative experience that lasts over a lifetime to embrace his or her life and share that precious life with your family and friends.  Talk about who you would like to invite to the hospital to meet your baby, before or after his/her death.  This is the time to ask for what you need and to set boundaries for what will bring you life and peace in a challenging time. 

    You can also use this time to make your baby’s birth and death as holy and beautiful as possible.  Click here for more information. 

  • You are walking a journey of sacred suffering.  Lean on your clergy and your faith-community to support you with prayer and pastoral wisdom.  Reach out to your parish priest. You can schedule a comfort call or spiritual counseling with Red Bird Ministry.  

    You can also plan for your baby’s baptism immediately after birth. 

    Have your priest or the hospital chaplain on the list of those to alert when you go into labor or your baby is scheduled to be born.  You may also want to have your own holy water in case you are called to baptize your baby in an emergency situation. (CCC #1256) Infants can also be confirmed before death and may also receive tiny amounts of the Blessed Sacrament. Talk to your priest and doctor about this option. 

    It will be helpful to have sacramentals with you in the delivery room or at the hospital before/after your baby dies.  Having holy water, holy oil or a rosary to hold onto during moments of suffering brings grace and consolation.  When others ask what they can do, consider asking someone to organize a Holy Hour or community rosary to intercede for your family, your baby’s healing, and grace for mom and dad. 

    No mother should walk this journey alone. In this space, you'll find a compassionate community ready to offer emotional and spiritual support. Whether you need guidance from your parish priest, counseling resources, or simply a listening ear, we are here for you. Together, we lean on our faith, finding comfort in the sacraments, prayer, and the embrace of the Church. 

    “The Lord is close to the brokenhearted and saves those who are crushed in spirit.” – Psalm 34:18

  • Let Yourself Be Loved: Big Lessons from a Little Life - Elizabeth Leon's memoir on embracing her son's terminal diagnosis of Trisomy 18 and finding healing through her grief.

    Lily of the Valley Ministry Lily of the Valley is a Catholic lay ministry that serves families experiencing infertility, difficult prenatal diagnosis, postnatal medical challenges, and those who have had a pregnancy or infant loss.

    Be Not Afraid - BNA is a private non-profit organization supporting parents carrying to term following a prenatal diagnosis.

    Isaiah’s Promise - Isaiah’s Promise was founded in 1995 to provide families, who decide to carry to term after receiving a severe or fatal prenatal diagnosis, support, information, friendship and hope.

    The Morning - support for prenatal diagnosis

    Choosing Sorrow, Choosing Joy - essay from Catholic Review on living through a prenatal diagnosis.

We sat in the wake of the devastating news of his potential diagnosis. We keenly felt the universal truth that most of our lives are out of our control. All we can do is trust and surrender to the Lord, confident of His presence and love, but with no certainty of outcome. Our plan was to fall in love with our baby and embrace whatever time we were given. This felt like a terrible plan. I wanted a plan that included changing the test results and making him healthy.

~Elizabeth Leon, Let Yourself Be Loved: Big Lessons from a Little Life