Friday, June 26, 2009
The past three weeks have been quite a roller coaster of emotions for our new family:) So let me start at the beginning, and bring everyone up-to-date. About six hours after Logan was born, he was moved to the NICU (Neonatal Intensive Care Unit) at Parker Adventist Hospital. A wonderful nurse, Emily, discovered that Logan had a slight heart murmur as well as some low O2 levels. They wanted to put him on some oxygen, and also run a few tests on Logan.
At first they ran a chest x-ray which showed some fluid in the lungs. Now, because Logan was born via C-section, this can be normal due to the lack of coming through the birth canal. We crossed our fingers and hoped for the best. The next day the pediatrician in the NICU wanted to run an echo-cardiogram which is essentially an ultrasound of the heart. On Friday we learned of some life-altering health concerns that our brave new son would have to endure.
The first diagnosis was that Logan had a severe congenital heart defect known as tetraolgy of fallot. This particular disorder has four key features. The first is a ventricular septal defect (VSD) which is a hole between the bottom two chambers of the heart. The second is pulmonary stenosis which is an obstruction (via constriction) of the right ventricle of the heart to the lungs. These two are the most major and will require surgical attention. The other two items are minor, and need no correction, but are as follows: the aorta lies directly over the VSD, and the right ventricle will develop a thickened muscle due to having to work harder to supply the lungs with oxygen.
Unfortunately, this condition will require Logan to go through at least one open-heart surgery. However, there is good news. He is showing incredible resilience in his Oxygen levels, and he is growing like a weed! He is currently up to 7 lbs 4 ozs, and he's 19.5 inches long! This is an incredible growth rate, and he will need to continue to grow to fare better with the surgery. Currently his O2 levels are in the high 80's. The surgery ideally will be done between 4-8 months of age, the older the better. However, it's a balance of time and risk, as his oxygen levels will continue to fall as his pulmonary artery becomes further constricted. (This happens by the artery not growing at the same rate as the heart and also by a small muscle underneath the artery that will grow bigger as his heart has to pump harder to get oxygen). So really if his O2 levels fall to the low 70's or high 60's, then they will need to take Logan in sooner, but at Logan's current rate, that doesn't appear to be likely.
Now if Logan does make it to the 4-8 month mark, he has a 50/50 shot at only having to do this surgery once! Please pray for this! It is called a valve sparring technique, and they will essentially "widen" the pulmonary artery. They use a tool called a "dialator" which will allow Logan to only go through this whole process once. If they are unable to use this technique, then they will do what they have done for decades and insert a metal shunt (called a transannualer patch) into the pulmonary artery. This will require a second open-heart surgery between the ages of 3-14 (this age varies tremendously patient to patient). They won't be able to tell us if they are able to do the valve sparring technique until they are in the middle of the surgery. Regardless of which technique they will use, they will be able to correct the VSD using Gortex to patch up the hole, and the other two problems will self-correct with no intervention.
Tetralogy, while severe, is relatively common. It happens in 1/2000 kids. This gives us hope because the chief surgeon at Children's hospital has done this surgery many times over. (By the way, we transferred everything up to Children's hospital in East Aurora, and they're wonderful).
Because of this heart condition, Logan has the potential to get "Tet" spells where his whole body will become blue (cyanosis) when he becomes angry. So let's just say we have the perfect excuse to spoil our little Logan! To date, he has NOT had any tet spells, and his color looks very good. The cardiologist is fantastic, and she is very encouraged by his growth and O2 levels.
On Friday, June 5th, we also got the blood-work back from the Mayo clinic. It was then that we were informed that Logan has Trisomy 21, most commonly known as Down Syndrome. This was quite a shock to Kireta and I, as nothing had shown up in any ultrasounds, etc. However, we are taking the diagnosis with stride and are learning as much as we can about the disease. Our close friends and family are all notified, as well as our church. We have yet to contact any support groups, although they are numerous, and we plan on doing so shortly.
If you're reading this for the first time, you might be surprised to learn that Logan has Down Syndrome (DS). His features are quite mild, and he displays only a few of the traits that DS patients usually show. Unfortunately, there is no corrolation between the physical features of DS and cognitive ability. There is a huge range of severity levels in DS and we just won't know until time passes how severe his cognitive disability is. However, Logan is displaying some very positive signs that should help in his development. For one, his tongue does not protrude, which hopefully should help in his speech therapy. Also, his muscle tone is fantastic, which is rare for kids with DS, especially so if they have a congential heart-defect. His hearing is presently very good, and he is extremely alert and follows the direction of your voice. All of these are very positive signs.
If I might, I'd like to share a few things about DS that might shed some light on this disease. First of all, DS happens at conception, the moment the sperm and egg divide cells. This is not caused be lack of vitamins, alcohol, caffeine, etc. It is congenital, meaning that neither Kireta or I are carriers of the disease, but that anyone can produce offspring with DS. Kireta is 30 years old, which is fairly young. However, she had a 1/937 chance of having a child with DS. By age 35, this risk increases to 1:352, and at age 40, 1:25. 1 in every 733 children are born with DS. And you might also be surprised to learn that 80% of DS kids are born to mothers UNDER the age of 35.
Logan has Trisomy 21, or nondisjunction, which is the most common type of DS (95%). This simply means that there was a failure of one pair of chromosomes to separate evenly during meiosis. Logan ended up having 47 chromosomes, instead of the typical 46, and in particular he has 3 of the number 21 chromosome (thus trisomy 21).
The mortality rate for DS patients has increased dramatically over the years. While once as low as 9 years in the 1920s, patients have an average life-span of mid sixties today. This is primarily due to an increase in medical science, as well as early-intervention, inclusion, and a whole lot of love! DS kids are prone to a myriad of health problems, but knowing what to look for to catch things early will help Logan tremendously. 60% of DS kids are born with a congenital heart-defects. They have many issues with vision, hearing, sinus issues, motor-skills, speech and other areas of development. Generally speaking, we can expect Logan to progress at 1/2 to 2/3 the rate of a normal child. But take heart! There has been no better time to have a child with DS! Logan is protected by so many laws, the biggest of which is a right to education! He will be involved with early intervention, a service which provides a whole team of dedicated specialists, including speech therapists, physical therapists, and occupational therapists. This is free from the state until the age of 3. Afterwards, he will continue to have a whole team on his side! We will continue the therapy even into school, and Logan will be included in a regular public school with Noah. Of course, he will have to attend some special education classes, but he will be integrated as much as possible into the mainstream. This is extremely important for Logan's development! Many children with DS have graduated high school, and some have gone through college! DS children have what is called an Individualized Education Program (IEP) that lets them custom build their high school curriculum to help them succeed in independent living. Many are living independently, holding a job, going out with their friends and enjoying activities such as dancing, movies, camping, traveling, etc! Our expectations remain high for Little Logan, and I know with all of your support and prayers, he will do quite well!
If you are interested in learning more about DS, I encourage you to read an excellent book, "BABIES WITH DOWN SYNDROME: A NEW PARENT'S GUIDE" and make sure to get the most up-to-date edition (currently 2008). If you are a family member of Logan's, this book will answer all of your questions, and really give you some comfort about this disease. It truly is an up-lifting book, and it was recommended to us by our pediatrician.
That's all for this post. Sorry, it's a book's worth in and of itself, but there's alot to digest. Stay tuned for more info!