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A letter from one mother to another who just found out her baby in the womb has ARPKD, a rare genetic disorder of the kidneys that has no cure. (HT: LJT)


I am so sorry that you received this news. Please know there are hundreds around you who have been in this same or a very similar position. We know the pain that facing this decision brings you. Many others before you have followed the advice of doctors, family, and friends to terminate such a pregnancy. I understand that the decision they make is almost always out of the highest love for their child and a desire to prevent suffering. I want to be very sensitive to that, but to also encourage you to look from a different point of view.

It seems to be a foregone conclusion in our culture that preventing suffering is the highest goal, but I think we lose sight of the fact that sometimes in our lives the greatest blessings come to us after we have gone through the greatest suffering. I was advised to terminate with two of my ARPKD daughters after their 20 week ultrasounds. The following weeks, months, and years have been difficult and even terrifying, but I am so glad that I did not follow my doctors' advice. Yes, my daughters have suffered to some degree (though I know not as much as many other ARPKD kids do), but their pain and tears have grown them into strong little girls who do not take life or health for granted, and who know how to be thankful for the little things in life. They are more mature, more wise, more grateful, more loving, than so many other children their age who have always had "perfect" lives.

Children with special needs have a way of blessing and inspiring those around them too, in a way that healthy children never could. I know greater suffering probably lies ahead for our girls as we face esophageal bleeds and organ transplantation, but we have talked these things through with our oldest, and if my seven year old daughter can face these things with courage, then perhaps she doesn't need to be shielded from the suffering, but only equipped to walk through it. Someday my girls will take the faith and the strength that they learned from their sufferings and use it to inspire and bless all those around them. It would have been great loss for all who know them to have ended their lives early.

I know that this is one of the most sensitive and personal topics. I pray that I do not sound judgmental in any way. I only mean to offer hope.

With love,

Katherine Eby

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10 thoughts on “A Letter to a Mother Thinking about Terminating a Baby with a Genetic Disorder”

  1. Matt says:

    My wife and I found out prenatally that our son would be born with downsendrome. We were advised by our genetic counseler to abort. But we refused. He is now almost 7 years old and is such a blessing to our family and those around us. God has taught me more about His soverignty thorough this expierence than I could have learned other wise. Thank you for being willing to talk about such a sensitive subject.

  2. donsands says:

    Difficult and heavy stuff for a Mom to go thru. Nice to have some encouragement from a Mom who understands.
    I know a fine couple whose daughter had spinal bifida in the womb. They were invited to terminate this baby. But they prayed and prayed with great sorrow filled hearts to do their Savior’s will. They were blessed to have one of the finest Surgeon’s at Johns Hopkins, Ben Carson, operate on their child in the womb. She was still born with the defect, but she was in a better way. She is the joy of their lives in the grace of Christ their Lord.

    I honestly believe God has some of His bravest beloved children take on these kinds of trials. And of course His grace is sufficient, even though at times it may not seem like it.
    I pray this child will be given life, and will astound this world and bring much glory to God. Amen.

  3. Theologian says:


    Wow. Thank you for posting this.

    I have some concern with you closing the post on C.J. Mahaney. Could you explain your rationale?

    Thank you,

    1. Glenn says:

      Hi Theologian,

      Why are you concerned that Justin has closed a post on his own blog? He is under no obligation to do anything here beyond what he wants, generally speaking.

      As to the CJ post, well, if you look elsewhere you will find that many people have used the comment sections to pour out bile and accusations which neither help nor add anything. Some crop up on many blog comment sections repeating the same things over and over and in the process demonstrate no desire to see anything Godly happen.

      As such it would serve no real purpose except to provide another platform for their very unhelpful rantings.

      1. Theologian says:

        Hi Glenn,

        Thanks for your response. I guess I was thinking about it differently perhaps backwards. I thought that a comment section being opened on JT’s blog would with regards to Mahaney would allow for encouragement to pour forth, especially with regards to those who frequent this blog. I have only been blessed by Mahaney’s ministry, nevertheless, it could be helpful to allow for a forum. Thanks for answering for JT though:)

        Many Blessings,

  4. Chad says:

    Hopefully mom will go through with the pregnancy. Her little boy or girl WILL make a difference in someone’s life, and if he/she becomes a believer in Christ, then great gains for the kingdom may become reality.

    I don’t know if I could understand her fear, or anger, or sadness, or whatever emotional cyclone she must be feeling. As a man with ADPKD, I am sure glad that my mother did not abort. She has recently found out herself that she has the disease and is facing eventual kidney failure. Mine is prolonged, but I never know when the sharp pains will come or the fear comes back when I suffer an inability to even go to the bathroom, as embarrassing as that is! But, my faith is in God and because my mother chose life for me, I can live in Christ. My disease is only temporal, my God is everlasting.

    Please mom, think of the eternal, not the temporal.

    Will be praying for you. Thanks for the post of this interaction.

  5. chiefleast says:

    Thank you for grappling with the tough issue of God’s sovereignty and a child’s suffering. The mom who wrote the letter has deep roots planted into the goodness of God and His unfailing purposes to make us more like Christ through all circumstances. I personally know a great couple who have a baby with an “extra chromosome” and have been blessed through the whole experience. I pray God turns the tide of the culture of death we currently live in. I wrote a similar article on abortion after the Anthony trial:

  6. Angie Batey says:

    If every woman prayed to God and asked permission to abort before they decided to do it then no woman would ever get an abortion.

  7. Rachel says:

    The grace and compassion with which Katherine writes to Emma is a sweet testimony to so many parents who may be frightened by the prospect of raising a child with intense medical needs. Thank you, Justin for sharing and thank you, Katherine, for leading by example.

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Justin Taylor, PhD

Justin Taylor is executive vice president of book publishing and book publisher for Crossway and blogs at Between Two Worlds. You can follow him on Twitter.

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