With Melanie's permission I am posting an e-mail she had sent to me this morning. I did not post the family picture however if you'd like to see the Ritzman's and their beutiful family it can be sent to you privately. I told Melanie that there is a strong T18 community out here. I hope that you will raise your voice, share your strength with the Ritzman's. I only "met" Melanie a few days ago through a friend of a friend, but my heart goes right back to those beginning days with Alyssa Grace. My heart now aches for this family and the truama that they are being put through just to see the face of their MIRACLE BABY! How can this be? I don't have answers, but I do have a willingness to help in any practical way that can.~ Trish
A note from Melanie:
I know what I am about to ask is a leap of faith on all your parts. I am asking you to share a piece of your personal and private heart’s story with me, a total stranger, and a group of Doctors you don’t know. I promise I would not miss use this but a thought has occurred to me. These Doctors believe the medical statement “ that Trisomy18 is not compatible with life”. What would happen if they, as a group, were faced with your children’s pictures, medical list of complications that each of you have and are currently facing, and you child’s current ages ???? Then maybe they would see PROOF OF LIFE . Also they would clearly see a realistic view into a lifestyle of right to life.
Would you please help me?!?!?!?
Would you please network this out to anyone who has a Trisomy18 child.
Below I have attached an explanation of what is happening to our family right now.
And a current family photo of us. Melanie and Mike Ritzman of Lancaster County, PA
Well this is the latest
1st my husband sweet honey pill version
and then my right between the eyes Mother Bear version.....
same day, same stuff, & he is the better Christian than I !!!!!!
Mike's Thoughts...
Dear Prayer Partners,
Melanie and I would covet your prayers. We have some disturbing news to share with all of you. Earlier this week Melanie had an OB appointment with a doctor instead of a mid-wife. One of the questions we were to get nailed down before delivery was whether the doctors in our practice would perform an emergency c-section if Baby Joy was in distress. T18 babies typically go into distress during labor. The answer Melanie received as quite disturbing. The doctor basically told Melanie that there would be no need for a c-section because "IT" is going to die anyway.
Today, Melanie and I had an appointment with the NICU advocate and received further clarification... The OB doctors in our practice are "indecisive" as to whether they will perform an emergency c-section if Baby Joy is in distress. We will have a final decision next week when our advocate and midwife meets with the doctors to discuss our case... Please pray that the doctors will perform an emergency c-section if needed.
Melanie's midwife has been great and will do everything that she can to see that Baby Joy comes into this world. The NICU is on board and will do what they can to make sure she gets the care she needs. CHOP, DuPont, and John's Hopkins do work with T18 issues. The only problem is whether our delivery doctors will perform an emergency c-section if she is in distress.
On a positive note, we have been put in touch with 7 families that are raising T18 children ages ranging from 13 months to 23 years. This makes the above prayer request that much more distressing. We have a friend that works at Johns Hopkins and she is getting us contacts there with medical professionals that deal with genetic diseases. One of the families that we are in contact with is giving us contact information for doctors at Children’s Hospital of Philadelphia (CHOP).
Melanie and I are in a spiritual battle regarding the sanctity of life... The medical community is split on how to handle children diagnosed with T18. She has been labeled and is not even referred to as a person. She is an "IT". It appears to me that the sanctity of life only applies to healthy children.
Please pray that Melanie and I keep our "cool" and can maintain a witness through this entire process. Please pray that we will be able to find another OB practice that we can work with if these doctors will NOT agree to perform an emergency c-section. We have had a lot of emotional ups and downs.
Well, I think I have sufficiently overloaded all of you. Please feel free to ask us any questions that you might have..
Thanks for Praying
Mike
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14) Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
Hi Mike,
ReplyDeleteMy name is Jennifer Vanderbeek. I live in Boise, ID. My daughter Elanor is 10 years old, and has full Trisomy 18. She was born full term, but was only 4lbs at birth. She was in NICU for 7 days, and we took her home not knowing her diagnosis. A few months, and a few hospital stays, later we found out about the Trisomy 18. She had a cleft lip and palate, two heart defects (PDA and VSD), and "failure to thrive". To make a long story short, we persevered. We had a g-tube placed, we had her lip and her PDA fixed. We then were faced with having the VSD fixed. She had pneumonia and was on a ventilator at the time, and if she was extubated she wouldn't make it. We decided to have the heart surgery. We made all of these decisions not because we wanted her to live, but because we could see in her eyes and her smiles (around the tube down her throat) that SHE wanted to live. She has an amazing joy and passion for life. Anyone who spends time with her knows this. In my opinion, NO CHILD, regardless of diagnosis, should be judged before he/she has a chance. The kids with Trisomy 18 I have met have a wonderful life. They probably won't drive a car, hold a real job, or get married, but they are loved, they are happy, they bring amazing joy, comfort, and lessons to their families and friends.
Thay was my opinion. Here are some facts: most of the studies your doctors are siting were probably done in the 1980's or before. When Elanor was done, there were no statistics after 1984. Medical technology and attitudes have advanced incredibly in the past 25 years, and it isn't ethical or right (again, in my opinion) to use outdated research to back up a plan of care (or the lack of one). Ask your doctor just how current the research is. Give him(her?) a list of websites that provide more current information on Trisomy 18 kids. www.trisomyonline.org is one, www.trisomy.org is the official support group's website.
Our prayers are with you and your baby. She is already blessed.
Jennifer Vanderbeek
Phil46@cableone.net
Oops. I meant "When Elanor was BORN". Maybe proofreading would be good! :)
ReplyDeleteI will email positive medical publications related to 91% success rate of cardiac surgery etc. to this family.
ReplyDeleteMeanwhile, the trisomy 13/18 community must be aware that these children are certainly under attack by the medical system. Their lives are deemed to be without purpose. Commencing 2000, the international resuscitation guidelines have recommended that there should be NO RESUSCITATION of newborns with confirmed trisomy 13/18 regardless of anomalies or mosaicism etc. In 2006, the American Academy of Pediatrics adopted this recommendation.
The reason given is that their is a high rate of death and the survivors have "an unacceptably high rate of morbidity."
It is a rather frightening situtation because this is a medical guideline based on a subjective description. It is incredibly wrong.
Barb
www.anniefarlow.com
I am in total agreement with both Jennifer. And, as Barb said, I have seen the medical community (not all) treat our son, Zane (who just turned 3 this month), as a statistic who is not worthy of life. The only reason he was resuscitated after birth was because we did not have a prenatal diagnosis. To this day, I thank my lucky stars for that. I cannot imagine my life without his beautiful smile, his sweet demeanor, and his mischievious behaviors. And, fortunately, we have found a medical community in our area who is nothing but supportive of him. That has not always been the case.
ReplyDeleteThis is an issue that can no longer be deemed acceptable. Who has given the doctors the right to classify the lives that are worth living and those that, to them, are not? It is time that the medical community steps out of the past and into the present where families are more educated and more willing to take on the role of parent to a child with a disability.
My best to you and your family as you advocate for your daughter.
Susan
www.mylifewithzane.blogspot.com
Melanie and Mike,
ReplyDeleteMy little girl will be 5yrs. in March. So unbelievable. Her blog is annabelgrace.blogspot.com. She is the happiest little girl I have ever seen. She may never speak, may never walk but nothing but pure joy. She does have full T18 (tested twice), very large VSD and not repaired yet. HEr biggest issue is urinary, but lots of people deemed compatible with life have urinary issues. Please feel free to use anything on the blog, pictures, etc. to show these doctors that their thinking is outdated. Please give them Dr. John Carey, Salt Lake City, Utah for a resource. They must treat your sweeet child as any premature baby and place her in the NICU and give her those same chances. Can you tell these drs. make me crazy! My email is suzyque92@hotmail.com
Hi Melanie and Mike.
ReplyDeleteI don't know what to say about doctors that won't do all that is necessary to save someone in their care. I dislike doctors greatly, and have on several occassions, had to tell them where to go and what to do with their statistics. I've had several nurses high five me shortly after.
My daughter Sloane is 11 and has Partial Trisomy 18. The docs told us they had no idea how long she would live or what she would be able to do. We were told this the day she was born.
Today, she is a thriving, beautiful, happy, loved child that has changed the lives of many people. She does not talk but expresses herself with gestures, noises and her eyes. The first 5 years were a roller-coaster, but she seems to have leveled off and her health is great now. The biggest problem we have is seizures.
I would not have changed a single second of our lives with her. Do what you know in your heart is right and go to another hospital, change doctors, they don't know it all....
To the Fourneir Family:
ReplyDeleteIf I could please ask you for a photo of Sloan at birth and now. And a brief list of her medical issues since birth. I truly am sorry to be so intrusive
I want my doctors to face Trisomy18.
As of right this moment, they have to face 9 life stories and their beautiful faces.
I have been so blessed with each of these precious little ones stories.
And my eyes have been opened to the possible realities of a change of lifestyle for our family....
Melanie
I too have been blessed with a beautiful Trisomy 18 daughter, Christina. She just turned three on New Year's Eve. You can read more about our story at http://christinadeane.yolasite.com Please feel free to contact me at jtdeane@comcast.net
ReplyDeleteWe will keep you in our prayers,
Pam Deane