Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, June 25, 2013

Dear Doctor:

Here is a letter that I sent to my OB's office after Owen was born.  You may (or may not) recall that I switched docs mid pregnancy so that O would be in the same hospital/health system as his siblings and pediatrician.  I felt like it was important he hear from me afterwards to let him know how it was going...

Dear Dr. _______:
I apologize for how long this letter has taken to write.  I intended to get it to you months ago, but four kids sure take up a lot of my free time!

An update….Owen Henry was born at 38 weeks 5 days on December 28, 2012.  He weighed in at 7 lbs 7 oz (our biggest baby!).  And somehow he already turned 4 months!  Time sure does fly!  At his check up, he was 15 lbs 10 oz. and 25 inches.  He is currently meeting most all his milestones; loves to smile and roll around.  Medically, he has some hearing loss, believed to be due to fluid from his tiny ear canals.   He is getting temporary hearing aids this month and we will schedule him for tubes once his ears are large enough.  His muscle tone is a bit on the low side, but other than that, he is not any different that his siblings.  We have been so blessed to have another healthy child!

First, I would like to thank you for how you all handled the time during our diagnosis.  I cannot imagine that this is a part of your jobs that you particularly love.  To find anomalies during an ultrasound and still continue on with your work is quite admirable.  Although I began to recognize that something was “off” I felt very comfortable knowing that information was being gathered to care for baby and I in the best way. I apologize that the name of the ultrasound tech has escaped me, but the day the nasal bone was not seen, particularly, was one that I appreciated her professionalism, compassion and kindness.  She was always attentive at appointments and it is appreciated.

Secondly, I very much appreciate how you approached the suspicion of the Down syndrome diagnosis with me.  I have heard horrific stories from my many new friends about their experiences during the time of their prenatal or birth diagnosis.  I have been appalled with some of the conversations they’ve been a part of and sad that they were not provided the same medical care I was.  In reflecting on our conversation I believe you were giving me options without saying them because I believe you knew me well enough as a patient that termination would not be an option.  For that I am grateful.  This was a challenging season in my life and I am incredibly appreciative that I did not have to also deal with the awful reality that seems to be more common than I fully understood in a T21 prenatal diagnosis. 

I also appreciated the assistance of the staff as I switched practices to better serve Owen.  I am so very thankful that he did not have any further medical concerns arise, but for the hearing/audiology alone, it has made for an easy transition within the system.  Owen did spend 6 days in the NICU due to pulmonary hypertension and we were glad to have the consistent care with the NICU doctors and our pediatrician.  Not having a headache with the transition of my paperwork and records was very nice.

Finally, I wanted to extend my help, support and/or guidance to any moms who may find themselves in the world of Down syndrome.  I have found the community of moms who’ve experienced what we have has been invaluable.  If you ever come across a mom that would like or needs support, I would be happy to talk with them.  This has been a life-changing few months, but life is a lot less different than I originally expected.

I began blogging shortly after our diagnosis and have kept it current.  If you would like to see the diagnosis and birth experience through a family’s eyes, I’d encourage you to check it out.  Please feel free to pass the blog address and my contact info to anyone that you feel may benefit from it.  I have many DS blogs linked on my page, too.

My life in pregnancy years has come to a close (at least I think it has!) and I am grateful for the support I received through your practice over the years.  After my first miscarriage 10 years ago, I truly believed I may never get to experience motherhood.  Now, 4 kids later I am so thrilled to have healthy, beautiful children.

Me :)

No comments:

Post a Comment

I'd love to hear from you!