Saturday, August 20, 2011

Trisomy 18

Some of the blood work tests came back yesterday, and Jayden has Trisomy 18 or Edward's Syndrome. It's a genetic disorder that has an extra chromosome 18, which continually repeats and causes all kinds of problems such as heart problems, kidney problems, clenched fists, mental disabilities, etc. (If you want to know more about it, go here). About 50% of babies that actually make it full term die within the first week, but some can survive until their teenage years, depending on the type you have (there's 3 kinds). I'm not sure if they know yet what type Jayden has. The "good" news out of this is that it's not likely to happen again, unless one of them is a carrier for one of the 3 types (hope that makes sense).


So now, Katie and Cory are faced with a decision of what to do. Her doctor is suggesting terminating the pregnancy (she's 21 weeks today) because of the harm it can cause to Katie to have a still born baby, and the body not being ready to deliver can also cause problems with the placenta not detaching, which could lead to a huge infection. Another option is to try and get further along, then induce labor. What a crappy decision to make. I'm amazed at how well Katie is taking it! She said that she'd been preparing for the worst, so she's actually pretty calm about it. She's been getting every one's opinion about it including her doctor, family and she's going to talk to her Bishop (our church's congregational leader) about it to get his insight on the spiritual side of it. Then, comes the hard part of making a decision. I have total faith that my sister will know what's right for her and Jayden, and that Heavenly Father will provide a way for this whole experience to be more bearable for her.

7 comments:

Melissa Nielsen said...

my heart goes out to her and your family. What a blessing to have the gospel in our lives that can help us deal with difficult times like this. She and your family will be truly blessed. And she will get to raise him some day in paradise.

Sarah said...

Oh my gosh! I hope Katie finds peace in the gospel and can make it through this trial. My hears goes out to her along with my prayers!

Gurr Family said...

Oh dear. That is a trial I hope I never have to face. I am grateful for the gospel that can help in that regard. It is so nice knowing that we can pray to our Heavenly Father and receive answers to our prayers. My heart goes out to her, her husband and your family.

Steven Sharp said...

Thanks for posting that info, Daleen! I'm very proud to know the Rosenlund's. You's be good peoples!

Amber said...

OH Daleen! How heartbreaking for your sister! My sister-in-law's mom had a baby a few years ago that had Trisomy 18. Their doc also told them to abort, but they just couldn't do that, so she went through w/ the pregnancy. He was nearly full term, she went into labor on her own. He only lived a few days but they were so thankful for those days. I can't imagine the decision your sister is faced with. I know that the Lord will direct her in making the 'right' decision. She, her husband, and your family will be in our prayers. Love you.

Unknown said...

I have a 2 1/2 year old with full trisomy 18. She is a beautiful blessing to the family despite her developmental delays and health issues. We have a large community online on facebook with kids ranging into their 30's with trisomy 18. I highly recommend going onto facebook and checking out Support Organization for Trisomy (SOFT), Trisomy 18 Mommies, Faces of Trisomy, and Trisomy 18/13 Journey. The following international organization can put your SIL in contact with some people who may be able to talk to her: trisomy.org (Support Organization for Trisomy 18, 13 and related disorders). If she chooses to carry to term (which I highly recommend as their is much guilt and pain associated with early terminations and inductions), there is a new group that can help her overcome the medical community's biases - trisomyadvocacygroup.org. My daughter's pages are http://www.facebook.com/rebekah.budd and www.buddzoo.com. God bless!

Annie said...

I am very sorry for your news. It is true that some of these babies only live for a few hours- but they are hours that the parents would never trade for anything. I had a baby with trisomy and I have just completed a large international survey of trisomy families. I have never heard of a mothers life being in peril as a result of having a baby with trisomy unless as a result of high blood pressure or something that is a risk for all pregnancies. I strongly suggest that you seek another opinion on this information.