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My Story

As most of you are aware, Luke and were expecting our first child in October 2010.  My first pregnancy was going well with no complications until we went in for a routine 30 week sonogram and fluid had developed around Parker's lungs, heart and abdomen and he was not growing at the rate he should be.  The Dr's told us that Parker had 0% chance of survival and he was born full term and went to Heaven shortly after he was born.  Today he is a precious little Angel that I know looks down over us and I have beautiful pictures that were taken by an amazing organization, Now I Lay Me Down to Sleep to keep the memories of Parker alive.

We had genetic testing done to see if we could find out the cause, but the testing that we completed all came back negative and Parker's diagnosis was left unknown. The Dr's told us that this should never happen again in a furture pregnancy.  So, a little over a year later, on December 8, 2011, I saw a little faint positive pink line on a pregnancy test and was ready to have hope again.  I was monitored closely and had monthly sonograms to check the baby's progress and all they way up until our 27 week appointment on May 24th everything looked "perfect".  But on May 24th, I knew something was wrong during the sonogram.  The Dr. came in and quickly stated "there are concerns and I am sorry, but your child has no chance of survival".  As scared and nervous as I was throughout this pregnancy, I really did not think that I would have to hear those excruciating words again.  I was told to just go on with my normal routine and can complete further testing after the baby is born to possibly find out the cause.  I felt hopeless and emotionally drained again, and prepared myself to have to say bye once again.

The evening of June 5th, Luke received a phone call from a friend who was also told that their baby had no chance of survival.  He stated that him and his wife went to Denver to see this amazing group of Fetal Dr's to get a second opinion, and they were given hope.  Luke's friend encouraged us to call this Dr. right away.  I have to admit, I was hesitant at first, because I had already began processing having to say good-bye again, and with all the concerns reported about our little girl, I really didn't think that a Dr in Denver would be able to see me and could tell me a better outcome.  But, I knew that it wouldn't hurt to call and at least see if we could get some better answers than having so many unknowns again about what could have caused this twice.  I called at 4 p.m. on Wednesday and was told to fax my medical records over ASAP and just 2 hours later, I was told the Dr. wants me in Denver at 8 a.m. the next day.  I was in complete shock and we packed our bags and were out the door in an hour.  I had several appts over the next few days and on Monday, June 11th, I had one of the best fetal Dr's in the World tell me "Your little girl has a CHANCE and there is hope.  Not a small sliver of hope, but HOPE."  And so our journey to hope has begun.....


Journal

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Final Goodbyes and Answers

Aug 3, 2012 11:47am

This week we had to say our last goodbyes (or as I like to say "see you in Heaven") to our Sweet Maggie Grace.  It was so hard to say that final goodbye even though I knew she was already in Heaven.  The services went really well, and I could tell that Maggie has touched many hearts forever.  She was so special, I don't see how anyone that had the chance to meet her couldn't have touched their hearts forever. When I get sad, I try to think about how Maggie and Parker are getting to know each other in Heaven and are having a blast together, how there is no pain or suffering in Heaven and how her and Parker are always happy and will always be well taken care of.

Luke and I go back to Denver at the end of October to meet with the Metabolic Specialists.  Earlier this week we were told that Maggie had Complex 1 Mitochondrial Deficiency.  We never had answers with Parker (we were actually told that what happened to Parker should not happen in a future pregnancy), and were worried that we were not going to get answers with Maggie either since all of the genetic testing we had completed before she was born came back completely normal.  Knowing that her and Parker have a diagnosis now helps with Luke and I to be able to move on without having so many unknowns and "what if's".  This disorder is really rare and when it is explained to me in "scientific terms" I can barely understand a word.  But basically, Maggie and Parker lacked the capability to break down an enzyme called Lactic Acid which produces energy for them to survive.  There is no cure for this disorder so we were told there was nothing that could have been done to save Parker or Maggie. The metabolic specialists at Children's Hospital in Denver are currently looking for the specific gene that caused this disorder.  The stated that it could take anywhere from 4 weeks to 2 years to locate the gene, but they are very confident that they will find the gene.  Locating the gene will not only help with future genetic research, but will also give Luke and I answers for what the future holds for us.  We are so thankful that the Dr's and Metabolic Specialists are working so hard on this for us.

Some people have asked about Memorial Donations.  If you would like to donate to a fund in memory of Maggie, there is a "Maggie Grace Schnakenberg" fund set up through the Children's Hospital Foundation at www.childrenscoloradofoundation.org where you can make a tribute gift in memory of Maggie.  Or you can mail a check to the address below:

The Children's Hospital- c/o The Children's Colorado Foundation

13123 East 16th Ave

Aurora, CO  80045  (be sure to put Maggie Schnakenberg Fund in the note section of the check)

The money will go to either a Hospitality Fund for patients who are currently going through a high risk pregnancy like I did and traveled to Children's Hospital in Aurora to receive services to help pay for hotels, meals and travel.  There is also a Metabolic Genetics Disorders Research Fund that the donations could go to.  Or if you feel more comfortable sending the donations to Luke and I, we will make sure it gets to the fund, just be sure to put in the note which fund you would like the donation to go to.  Don't feel obligated to donate, I just wanted to give an option of a place close to my heart that will help others that are in my shoes. 

I cannot thank everyone enough for all of your support.  The days, months and years ahead are still going to be a struggle, but hearing stories of hope from others and connecting with people that I haven't talked to in months or years and having their support and prayers means so much.  All the phone calls, e-mails, cards, donations, home cooked meals, flowers all each mean so much and we cherish them all.  Thank you for taking time out of your busy days to think of Maggie and our family, we are so lucky to have such a great support system.  I will be in touch and update as we continue to get more answers.

God Bless,

Luke and Tara



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Healthcare Facility

The Children's Hospital
13123 East 16th Avenue
Aurora, CO 80045
United States