Thursday, July 7, 2011

A Letter to a Mother Considering Terminating a Pregnancy for ARPKD

I joined the yahoo group for ARPKD/CHF (the genetic kidney/liver condition that Naomi and Emma live with) just a few days ago in order to post a question about Naomi's recent low white cell counts. Now I have found myself in a world with hundreds of others affected by this disease. Most are asking questions like mine, or sharing support and comfort, but this morning a mother posted that she had just received the news that her 13 week gestation unborn baby has ARPKD/CHF (definitive genetic testing had been done). She is considering terminating the pregnancy in order to avoid the otherwise inevitable suffering of her child. Many on the message board have also chosen that option, so I chose my words carefully, but I just could not remain silent. The following is my response. Please pray for Emma as she makes this most heart wrenching decision.


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


  1. Thank you so much for your courageous yet humble words of wisdom and hope. Our three year old daughter has Down syndrome and has been through some fairly significant medical issues and numerous surgeries. She now lives with a pacemaker, feeding tube and of course on going physio and speech therapy. And yet, as you are saying here, through all of this God has blessed us and we have learned so much as a couple and as a family. As Thomas Brooks once said, "Our greatest good comes through the sufferings of Christ, so God’s greatest glory that He hath from His saints comes through their sufferings."

  2. Hi Katherine,

    I came across your blog because a friend posted your letter on his blog. I work for a nonprofit called Hunter's Hope. We were moved by your letter and wanted to send you a gift - could you email me with your contact information?

    Blessings to you and your girls!

  3. Thank you so much.
    I hope you don't mind we reposted your letter. Stories like yours are a great testimony to the grace of Jesus and for His heart of abolishing human abortion.

    Grace and peace to you,

  4. Thank you so much for being faithful to the Lord and honoring and esteeming his precious gift of life.

    We will not rest until we have effect its abolition,

    Ian John Philoponus
    Abolitionist Society of Oklahoma

  5. My wife has ARPKD. We are expecting our first child later this year. She has had an amazing life. We hope that her kidneys will remain in good condition as the baby continues to grow. Needless to say, a life of normalcy is out there.

    1. Thank you both (Katherine and Ben) for sharing your stories. I have had Type 1 diabetes from the age of seven and lived my life with challenges and grace, knowing I always wanted to be a mom. When told not to have children due to my very brittle state of Diabetes I selfishly refused (knowing there may be consequences)! I started my beautiful family 17 years ago and have three wonderful children. One year ago my eldest boy was diagnosed with type 1 diabetes and my heart broke. Knowing all the hardships, surgeries and hospitalizations I had gone through, it scared me for him. a very beautiful friend told me " God has prepared you well to walk with your son, to comfort and care for him, your childhood disease has prepared you to be his Mother in the best way possible." I thank God everyday for my children and know there is greater purpose than even we know. Thank you.

  6. "Ben" thanks for the encouragement! It is hopeful to think that my girls could one day be married and have babies. Blessings on your wife and her pregnancy.