31 for 21 Blog Challenge: POST TWENTY FOUR: Health Considerations

Health Considerations

Besides having a distinct physical appearance, children with Down syndrome frequently have specific health-related problems. A lowered resistance to infection makes these children more prone to respiratory problems. Visual problems such as crossed eyes and far- or nearsightedness are common in individuals with Down syndrome, as are mild to moderate hearing loss and speech difficulty.  Approximately one third of babies born with Down syndrome have heart defects, most of which are now successfully correctable. Some individuals are born with gastrointestinal tract problems that can be surgically corrected.
Some people with Down syndrome also may have a condition known as Atlantoaxial Instability, a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities which overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities which place stress on the neck. Although this misalignment is a potentially serious condition, proper diagnosis can help prevent serious injury.
Children with Down syndrome may have a tendency to become obese as they grow older. Besides having negative social implications, this weight gain threatens these individuals’ health and longevity. A supervised diet and exercise program may help reduce this problem.

Cardiology with unexpected results

Yesterday, I brought Josiah to the cardiologist for a routine evaluation. 

At 12 wks gestation, we learned that Josiah had a hole in his heart (ventricular septal defect (VSD)).  At wk 18 gestation, we were told that the hole had closed on it's own.  Just to be sure, we made an appt at an Advanced Fetal Care Center.  There, they performed another ultrasound and confirmed that no holes were present.  We were thrilled.

At birth, a heart murmur was detected but was gone the next day. 

Approximately 3 wks ago, the pediatrician detected the heart murmur again.  He referred us to the cardiology clinic affiliated with the Children's Hospital.  Given the previous ultrasounds and EKG's (which all looked good), we were not concerned.

As a side note, Josiah developed a respiratory infection about 10 days ago.  He was subsequently admitted to the Children's Hospital for one night.  There is an assumption of RSV, though he was never formally tested.

Yesterday, I took Josiah to his scheduled appointment with the cardiologist.  The MD noted the rapid breathing and chest congestion, not surprising given the respiratory infection.  They performed an echo cardiogram.  The MD read the results, came in, asked me a few questions.......then the three pieces of news.

1. The original hole (VSD) in Josiah's heart never fully closed.  They are able to see how large it was, the portion that his own tissue covered, and the hole that still remains.  I am told this is mild-moderate in size.

2.  Josiah also has an atrial septal defect (ASD).  I am told this is mild-moderate in size.

3.  Most concerning, the right side of Josiah's heart is quite enlarged.  The right side of the heart is the side responsible for pumping air to the lungs.  It is hoped that his heart has been working harder due to the respiratory infection.  If that proves true, the heart should decrease in size once the infection clears up.

The positives: Josiah has not fever, is eating well, sleeping well, and not sweating during feeds.  His oxygenation level is good (avg 97/98) and blood pressure is good.

Teary-eyed, I went to the pediatrician immediately afterwards.  Josiah was given a nebulizer treatment in the office, which seemed to improve his airflow.  We were given a nebulizer to bring home.  We will use this three times per day for the next ten days.

We have a follow up early next week with the pediatrician.

We have a follow up appointment scheduled at the Children's Hospital in two weeks.  They will perform another echo cardiogram and compare the two.  We are keeping our fingers crossed that a marked improvement will be evident.

“Fear can keep us up all night long, but faith makes one fine pillow.” - author unknown

1st Hospitalization

As it usually happens, all three boys have colds.  First one gets it, then the next, then the next.  Carl and I never seem to escape either.  So, for about a month, the two older boys have had runny noses and ultimately coughs.  Carl and I have had the same.  Wednesday night, Josiah developed a cough.  Luckily none of them have fevers.  We made the decision to have the two younger ones checked out at the docs.  We were most concerned with Josiah given his young age and the DS (as we've read DS kids are more prone to respiratory infection).

Friday morning, we packed up and headed to the pediatrician.  The concern for Josiah became quickly apparent.  Given the DS, undiagnosed heart murmur, labored breathing, and upcoming long-holiday weekend, the MD gave his recommendation: Go to Children's and have him checked out there.

We packed up the van (again) and headed to Boston.  We arrived at the e.r. and were seen quickly (as the MD had called ahead).  After a short examination, they decided to admit our little man.  We were brought to a floor relatively quickly.  They assessed, re-assessed, and came up with their plan: Monitor his breathing, be sure his lungs don't collapse, monitor vitals, provide nebulizer treatments, see what the morning brings.  Carl eventually left with the two older boys (they got an overnight at Grammie's :), and I stayed with Josiah.

We had a double-room.  Josiah's little room-mate was a cutie pie...all 15 lbs of him (compared to Josiah's 9 lbs).  He was in for a fever & being treated with anti-biotics.  It was a small world.  Josiah and his new friend were born on the same day, at the same hospital....both admitted to Children's, and placed in the same room.  The other Mom was a sweetheart.  It was nice to have another Mom to talk to during our stay.

We were lucky.  Josiah's vitals remained stable throughout the night.  He received three nebulizer treatments but required no additional supports.  He slept and ate well throughout the duration.  Carl arrived early this a.m. to wait with me.  At noon, we were told that Josiah was doing well and could go home.  Around 1pm, we received our discharge papers, packed up our little guy, and headed home.

Josiah's little friend got the same good news....they, too, were going home.

I'm so pleased that we'll be ringing in the New Year at home :)

We close out 2011 knowing we are blessed with three happy, strong, healthy little boys.