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Saturday, May 15, 2010

For breath is life, and if you breathe well you will live long on earth. ~Sanskrit Proverb

My name is Lisa Macon. Nicole Parris is my friend.

Lisa on the left, Nicole on the rightI met Nicole eight years ago in an online group on BabyCenter called “Trying To Conceive Again”. Most of the group members, including myself, were experiencing secondary infertility, struggling to have another child after having had one or more successfully. Nicole was one of the few members trying again after miscarriages with no children as of yet. We were part of a group of amazing women, many of us still in touch, far-flung around the U.S., although most of us, including Nicole, have gone on to have the babies we dreamed of when we met. Together we have weathered many storms including surgeries and the loss of one of our own due to an inoperable brain tumor. You’d think with all this experience with tragedy we’d be ready for the next one, but nothing could have prepared us for what is happening to our dear friend Nicole and her family.

Who is this pretty when they are pregnant! No one!On April 14, 2010, Nicole gave birth to her second child, Wrenn Elise Parris. Wrenn was a welcome addition to the Parris family, consisting up to that point of Nicole, her husband Jason, and their 2 1/2 year old son Tanner. Other than experiencing the exhausting joy of chasing around an active toddler while dealing with morning sickness and exhaustion, the pregnancy was quite uneventful. All tests showed a perfectly healthy fetus developing. Up until the moment Nicole went into labor 3 weeks before her due date, all signs pointed to a healthy, perfectly normal baby arriving to join this amazing family.

I need to tell you what kind of parents Jason and Nicole are to Tanner, and you need to understand just how wanted he was by his parents, who tried for over 9 years to have him, weathering unexplained infertility and multiple miscarriages in the hopes of one day holding their baby in their arms. Tanner is doted on by his mom and dad. He doesn’t miss a single experience, although his mom worries over every scrape and bruise. Even in times of economic struggle, he eats organics. He has the best of everything even if it means his parents go without. It would be difficult to point out a more secure, well-loved child. If you’ve struggled with infertility, you maybe overlook the red crayon your child smears on the walls of your home. It is impossible to forget the joy and relief that results when you hold that priceless package in your arms for the first time and realize, “We did it. He’s ours, and the nightmare of wanting is over!”

That was true for the moment when Tanner was born. The true nightmare would begin a couple of years later.

When Wrenn arrived, she was whisked to the NICU right away. She was having trouble breathing. The initial diagnosis was Persistent Pulmonary Hypertension of the Newborn (PPHN), a not uncommon condition in full term babies whose bodies just need an extra day or two to realize that they are no longer in the womb before their systems switch to “Hey, we are on the outside!” status. But after nearly a week of pumping oxygen into her lungs with no improvement, doctors began to wonder if there was a more serious condition causing the problem. Wrenn cannot breathe on her own. Even with 75-80% oxygen being pumped into her lungs, she still breathes like a tiny rabbit, and when the oxygen is removed or turned down too low, her lungs collapse immediately.

The doctors began to suspect a Surfactant Protein Deficiency. SPD is a very rare genetic disorder where the child cannot manufacture the protein surfactant that takes oxygen from the air we breathe and puts it into our blood to be circulated through our bodies. Without this product, we cannot get the oxygen we need to survive. Wrenn and her parents were subjected to blood tests to determine if SPD was the problem. After over two weeks of waiting for test results, we now know Wrenn indeed has ABCA3 Surfactant Protein Deficiency, and she will need a lung transplant. There is absolutely no other way for this beautiful, much-loved baby to have a chance at a normal life.

Nicole and Jason are both carriers of the gene that causes this fatal disease. Even though they had basic genetic testing years ago during infertility, this is such a rare gene for one person in a couple to carry, much less two, and the test was not performed on them at that time. Each of their children has a 25% chance of having this disease. Tanner is quite likely a carrier.

Even though the Parris family has a wonderful family support system and excellent health insurance, there will be costs that they cannot hope to pay. They will be relocated soon to St. Louis, Missouri, from Orlando, Florida to await and prepare for a transplant. There will be travel expenses, living expenses on top of the upkeep of their home, care expenses for Tanner (who is used to being home with Mommy every day), and of course with Jason unable to attend to his two home-based businesses with any sense of regularity, this will strain the family financially. Those of us who know and love them do not want them to worry about this on top of everything else they have to deal with, so we are pursuing all options at their disposal. Every little bit helps.

Nicole will be posting blogs here regularly as soon as she is settled in St. Louis and until then, her friends will keep this blog updated with news. Please keep Wrenn and her family in your prayers. Any form of assistance is appreciated. In the next few days, this blog will link to a site where you can support the family via PayPal if you’d like to help out.

Thanks for visiting.

If we have anything to do with it, Wrenn will make it to 99! ~ Lisa Holmes, another friend from the BabyCenter group, who created this site.


Cindy on May 22, 2010 at 3:26 PM said...

Wrenn's Grandma Sue is a good golf friend of mine and I am a Nurse and had never heard of this. My Prayers are with all the family at this most difficult time. I hope to be able to be a sponsor for the Golf Tournament.
Cindy McMahon

Lisa Holmes on May 22, 2010 at 6:58 PM said...

Thank you, Cindy! Please share the blog with your friends so they can add Wrenn to their prayer list.

MomToTracyNSheri on May 23, 2010 at 7:53 PM said...

Cindy, if you want to split a hole sponsor, let me know - there are several people interested in doing so and I can hook that up for you. Thanks so much!


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