Ixl Diagnostic Parent Letter

[Miss Ruhnke]

Asan OB/GYN you will likely be the person who delivers the prenatal diagnosis of Down syndrome. Hopefully this letter will help you to deliver a Down syndrome diagnosis to your patients in a way that honors the child, and gives parents hope and encouragement.

With that in mind, I wanted to share a few thoughts on how to deliver a Down syndrome diagnosis to parents that will allow you to use your power wisely, and serve the highest interests of all your patients:

I hope that you would never tell an already scared, worried and shocked parent this harmful information. The truth is, there really has never been a better time in the history of the world for a child to be born with Down syndrome. Now, there are countless resources available to help people with Down syndrome reach their full potential. Today people with Down syndrome go to college, have careers, drive, get married , are public speakers, become actors and actresses, play (multiple) musical instruments, live independently, and live meaningful and productive lives.

Those parents will probably be like me, and not know much about Down syndrome. They may begin to imagine their new child based on their inaccurate information about Down syndrome, and this will cause them a lot of unwarranted fear. People are scared of the unknown, and Down syndrome will likely be an unknown for a lot of your patients receiving the diagnosis.

I would encourage you to do the same. We have a Facebook page where lots of families share pictures and stories of their children with Down syndrome, and we also have a website where we share 60 second videos of our son Noah just living life and doing things that typical kids do.

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

It is so uplifting when I read from parents like you. My daughter was diagnosed with DS when she was born and even with the challenges of having a special needs child in the Caribbean she is a joy to us. Thank you!!!

Actually, your comment about kids with DS going to college all having ONLY Mosaic Down syndrome is not only inaccurate but wildly false. I know several young adults with nondisjunctional Down syndrome (the most common form of DS) who are all successfully attending secondary education and pursuing meaningful career paths. Do not spread ignorance. Our children already fight an uphill battle of outside ignorance and prejudice. The last thing they need is that misinformation being perpetuated by someone who should know better.

Actually your comment about kids with Down syndrome going to college all having ONLY Mosaic Down syndrome is not only inaccurate but wildly false. I personally know several young adults with nondisjunctional Down syndrome (the most common form) who are all successfully attending secondary education and pursuing meaningful career paths. Do not spread ignorance. Our children already fight an uphill battle of outside ignorance and prejudice. The last thing they need is that misinformation being perpetuated by someone who should know better.

Wow I am really sorry you had to deal with that, but I do understand it was in a day and age where they hid kids and people who were different from everyone else a truly terrible time to be different and you did what you thought was best ? I had my son with DS in 1999 and the hospital still told me that if we wanted to there were homes we could send him to I was shocked to say the least not only was I dealing with my son being diagnosed with DS but now they were telling me I could send him away it made me so angry that in this day and age they would tell me that ? I am so glad I kept my boy he is my pride and joy ?

One thing I would add to the list is: tell the parents in person, not over the phone. I knew I was at an increased risk due to maternal age and my blood work confirmed it. Because of other health issues, I needed to be cared for by a perinatologist. Had an ultrasound at our first visit and he saw some physical markers for T21. We went ahead with the amnio. The genetics counselor called me with the results. I found out over the phone. It was terrible.

We were offered both families and resources for raising a child with special needs and we were also given information if we decided not to continue the pregnancy. Our ob was pretty neutral as he understood it was our singular choice. He did explain that my wife was at a higher risk of miscarriage and due to the severity of defects our daughter might not survive until term.

Yes. It is true that there has never been a better time for a child to be born with medical issues that might have not have survived in the past. But the opposite is there are times when the medical intervention prolongs suffering.

I respectfully ask you to reconsider your position on the idea that terminating a pregnancy is the the same as murdering a child in the womb. If anything, that harsh attitude may unwittingly drive people towards a decision they may feel conflicted about.

For others that may be making their choices when they get a pre-natal diagnosis, there are many ways to accept it. I wanted to mention our ob also offered us resources for adoption, although the risks to my wife made that untenable.

One thing that helped us was meeting a mother and father of a child who had passed at 18 months. Their daughter had seizures, strokes, multiple surgeries, in addition to her chromosome addition. They were frank about the joy she brought into their life and spoke broadly about their feelings that they often thought ending the pregnancy would have been a blessing to their daughter.

With that being said, abortion is murder. Always. We are unwillingly taking the life of another person, and that is murder. That little baby in the womb was a person whose life was taken from him or her. Again, I know that is hurtful and that that decision that your family made brings with much sorrow, as you said. Murder (abortion) is a always, as you mentioned, sorrowful.

The conscious act of taking the life of another human being is inconsistent with almost all spiritual traditions including Christianity. So, that becomes a truth that needs reinforcing in our current culture. Once a life has been taken, then the necessary response is one of compassion. That is to say, the act is condemned, but not the person carrying out the act, who will live with the consequences of any action may under free-will.

Soren, I am so sorry for your loss. It must have been heartbreaking to have to make that choice, but I know you did what you felt was best for your wife *and* for your child and that is all anyone can do.

4 years later we sit. Fayth is no longer on ANY medications. Doctors said she would need medication the rest of her life. She has not gone into another surgery, against the doctors anticipation. She lives with such passion and love. Oh yes, and she is a FIGHTER now on her own.

Thank you so much! Your post is very thoughtful and well stated. I wish every OBGYN was required to read it. I have a 12 year old great niece with down syndrome and her parents experienced the same things that you did from their obgyn.

Fortunately, they also received a lot of education and help and chose to carry Lanie to term. She is a delightful member of our family. She had so many resources available to her. She was reading at age 3. A lot of therapy starting at birth has given her a great boost in life.

Yes she has her issues but these do not stop her from being a fulling functioning member of society. Today she is in a regular class keeping up with her peers. We are so happy for all her experiences. She has brought so much joy and many blessings to our family.

Thank you for this article, as a Nurse-Midwife this is a topic that does come up in the work environment. What a great conversation starter this article has been for the Facebook group of nurse midwife students I am a part of. It has gotten many future CNMs thinking!!

Rick, as a volunteer social worker/foster facilitator/orphan advocate at an orphanage in China, I have the pleasure of knowing many precious children with Down syndrome. Pressure here to abort a child with Downs is even higher than it is in the States. Thank you for your well-written, thoughtful letter on this subject. I know many doctors (including many Christian ones) who would greatly benefit from this method of sharing the news with their patients. I intend to show them this letter.

RESULTS: Twenty-four studies were accepted. The weighted mean termination rate was 67% (range: 61%-93%) among seven population-based studies, 85% (range: 60%-90%) among nine hospital-based studies, and 50% (range: 0%-100%) among eight anomaly-based studies. Evidence suggests that termination rates have decreased in recent years. Termination rates also varied with maternal age, gestational age, and maternal race/ethnicity.

CONCLUSION:

This systematic review presents the largest synthesis of United States data on termination rates following a prenatal diagnosis of Down syndrome. Evidence suggests that termination rates are lower than noted in a previous review that was based on less contemporary studies and had an international focus. Heterogeneity across studies suggests that a summary termination rate may not be applicable to the entire US population.

I love this post! I have a 6 year girl with DS and I found out my blood test results over the phone at work. I was scared and decided to have the amnio. Two days following the amnio I received yet again another call at work from my OB with the results as well as prompting me to make a decision quickly. I really like my OB but the way the news was delivered was awful! Thank God my hubby kept me grounded and I now have the most precious gift, my daughter Lily. Love her to pieces!!! I do have to add that my OB called me a few years back to ask me if she could give my number to another mom in case she needed to talk. So my experience had an impact on her. ?

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