Original Status

Most will be familiar with this post, but we're re-posting so that everyone knows how this story begins: (originally sent out on March 3, 2008)

Dear Family and Friends,

As you may or may not know, we learned some difficult news last week concerning our baby and pregnancy. We will begin from the very beginning so bear with us should you have already received some of this information. Brent and I went in for a routine exploratory sonogram on Thursday morning at my primary Maternity doctor’s office. At a visit two weeks prior I had expressed a concern about the fact that I was gaining hardly any weight. At that point my Doctor wasn’t terribly concerned but did think that a sonogram would be a good idea to double check the baby’s growth. The Sonogram on Thursday showed a perfectly symmetrical baby that was about 3.5 weeks behind where it should be growth wise. At that point the doctor suggested we see a specialist immediately who has much more comprehensive technology to help us identify why the baby was not growing at the rate it should be. In our final consultation he said that this is a yellow flag, more than likely something we could handle with a watchful eye. He simply wanted more information to be able to have a handle on the whole picture.

Friday morning, the specialist that determined that the baby was actually only 2.5 weeks behind growth wise and while still concerning, much less so than a baby who was nearing a month behind growth. She also identified three potential areas of concern:

- Weak amniotic flow through the umbilical chord
o Many women’s amniotic sack begins to show signs of nutrient deficiently in the later weeks of the third trimester which while concerning, if presented at 37-38 weeks generally not a concern because the baby has almost everything it needs to survive outside the womb
o My amniotic sac showing signs of depletion is a bit early but very manageable with continuous monitoring of fetal growth and stress levels. As long as baby shows positive growth signs from nutrients received in the womb it can stay in the womb. The moment we see negative trending or stagnant growth, the conversation becomes when the doctors want to take the baby out so they can spur growth in the outside world.
o While the baby could survive at this point, the doctors continue to talk about the most positive outcome would be if the baby could stay in until the 34th to 36th week.
o In order to prepare for the possibility of an early birth I spent the weekend at Sibley hospital receiving steroid shots to give a boost to lung development.
- Heart Valve Defect
o Much of the day on Friday was focused on looking at the heart of the baby. The specialist sent us downstairs to a childhood cardiac specialist who did a 2 hour consultation with us regarding the heart situation. There is an AV Valve defect that is in the congenital heart disease family. It sounds much worse than it actually probably is. There are two little flaps in the baby’s heart that are missing. According to the doctor the treatment for a baby in this situation is a normal birth and then at about 3 -4 months of age the child would go in for heart surgery to install the necessary flaps in order for long term survival. Prior to surgery we would probably see a baby that struggles a bit more to breathe and would need a bit more supervision. However from what we were told the surgery was very low risk and the child would recover from it in 5 -7 days. The doctor said that the baby would probably never be a world class athlete but it would not keep them from being on sports teams.
- Clenched hands
o A baby with a chromosomal disorder is unable to open their hands. Our baby had been poked and prodded for 3 hours prior to them trying to see open hands and thus it was completely balled up in the fetal position not willing to show any body parts. She wasn’t concerned that she didn’t see it, but she said that if we were able to see a full high five hand, it would mean we were out of the dark. On a side note, all of my friends who have children report they have never seen a high five hand on a sonogram and not cause for total alarm.

Prior to going to the heart specialist the doctor’s stance was that if we were able to rule out the heart issue we simply had a small baby with a weak amniotic sack that could be observed and then birthed when it was determined to be not doing so well within the womb.

Unfortunately, we were not able to rule out the heart issue and thus it brings some much larger questions into play- is this a chromosomal issue? Are the causes genetic in base?
The specialist seems to believe that we are trending towards a chromosomal issue – particularly 2 fatal issues called Trisomy 13 and Trisomy 18. Essentially there are three chromosomes instead of two of the 13th chromosome or the 18th chromosome. These types of abnormalities would have been formed from conception and would be present in every cell division since conception. There is a bit of cause for us to be up beat about this not being our diagnosis as from what we have been told babies who have this disorder tend to show serious organ issues that stem well beyond the scope of the heart. Generally kidney and liver deficiencies would also be evidenced by abnormalities in head growth. We have seen nothing other than the heart issues. Babies with this disorder rarely live outside of the womb for more than 24 -72 hours and according to our doctors, no great measures are taken to saving babies with this condition because it is universally deemed to be unethical to implement lifesaving measures on a child in such a condition.

An amniocentesis can definitively determine whether or not our baby has these two chromosomal issues and we have elected to move forward with this testing. We have requested that the testing be conducted ASAP and hope that we can get in today or tomorrow as this will allow us to know more information before the end of the week.

While we wait for the test and results, we want stress a few important points. First, we’re struggling mightily but we are moving forward, focused on the many hopeful outcomes. Second, while we are obviously disappointed in the news to date, this information makes us realize how blessed we are with support from friends and family—this support CANNOT be overstated and we’re eternally grateful. We’ve already heard from a number of you and I know that we have countless others that stand ready to help as requested. Right now, there is little that can be done save keeping us in your thoughts, prayers, and be ready to listen to one of us drone on should we reach out. Assuming we receive positive results from the amniocentesis, we will have two major challenges that we won’t hesitate to ask for support. First, our nursery isn’t finished so we’ll be working on that as quickly as possible. Second, since I will be on bed rest, Brent is concerned about his ability to entertain me for up to two months. No doubt, we’ll be scheduling dinners and other in-house events to keep us from driving each other bonkers and we hope you’ll have a chance to join us. (We’re still keeping our humor intact.J)

In sum, we’ll do our best to keep you updated as we learn more information and we thank you for your support.

Sincerely,

Brent and Kirsten