February 25, 2014

Summer Writing Project~ Introduction to Disability~SB 654

I started this summer with one blogging goal, to take part in a book writing project with Meriah Nikols concerning life affected by disability.  But, true to life with disabilities, Addison's needs pushed this project (...and running and anything else that wasn't part of daily survival) to a far back burner.  As I told Meriah, so far back it's no longer on the stove.  I still feel very passionate about this project and I still need to get back to my writing.  It is too good for me to not do it.  I don't know if I will get any other segments written but you have to start somewhere.  And in this minute this is my somewhere. 

The first topic was our introduction to disability.  How did we enter the world of disability?    

This post was initially published on February 25, 2014 as part of an effort to encourage the Senate to pass Bill 654, the Down Syndrome Pro-information bill.  SB 654 was passed and signed into law by Governor O'Malley on May 5, 2014.  I am proud to know Addison had a part in helping save the lives of children diagnosed with Down Syndrome in the womb. 

I am submitting this post to Meriah because it explains our introduction to disability.

Love,  Kat

Tomorrow Bill 654 is going in front of the Maryland Senate. The pro-information bill would require healthcare providers to give true, current and accurate information to those receiving a diagnosis of Down syndrome prenatally or postnatally. Furthermore, the information would be written and provided by the leading Down Syndrome Advocacy groups. I believe very strongly that this bill will help to save the lives of the estimated 95% of children diagnosed with Down syndrome whose parents choose to end their lives while still in the womb. I believe this bill would help change the world's perception of Down Syndrome. I believe this bill would do much to change the way children diagnosed with Down syndrome are welcomed into the world. This is the message that will be presented at the hearing in Annapolis tomorrow.

Receiving A Diagnosis… Addison’s Beginning

Addison, the youngest of our 9 children, was born a month prematurely on April 28, 2013.  When we were expecting, our specialists identified what they believed could be a congenital heart defect of the Vascular septum.  When he was born, Addison was whisked away to the NICU where he was carefully checked over by multiple doctors, including a neonatologist.  Preliminary testing and further evaluation by a pediatric cardiologist at Children’s National Medical Center showed only a very minor hole in his heart which we monitor with regular echocardiograms.

Because of my diabetes and the concerns over his heart, our pregnancy was very stressful.  When his amniotic fluid became dangerously low I was admitted to the Hospital where we underwent testing and observation for several days before labor was induced.  Our time there had already been very stressful and marked with unpleasant circumstances at the hands of hospital staff.  For example, I was not permitted to manage my own blood sugar testing and insulin yet on three occasions nurses were prepared to administer the wrong insulin.  A mistake that could be deadly.  With the stress level beyond measure we could not wait to simply hold our son and know he was well.     

It was quite some time before Addison was finally in our arms.  But he wasn’t to stay there.  Even after telling us his heart was strong, nurses continued to come and take him for “testing” and to give him bottles, something I had asked they not do because I intended to nurse him.  I have successfully nursed all our babies since they were in the delivery room and was confused as to why I was having trouble getting Addison to eat.  They continued to cite my status as a diabetic for pushing formula, however his blood sugars were normal and stable from the moment he was delivered.  When I look back now it is clear that the hospital staff were not concerned about his heart nor his blood sugar but in fact were following standard protocol for newborns diagnosed with Down Syndrome.  Only NO ONE had even mentioned to us that they suspected our baby had Trisomy 21.  
By the morning after Addison's birth my husband was upset and I was wrought with exhaustion and frustration over not being allowed to have our baby and take care of him as I had done with 8 previous babies.   I was in tears and my every thought turned to getting our baby and going home.  We had spent 9 months hoping and praying and testing and injecting insulin and we just wanted a few minutes to celebrate the healthy son we had delivered.  But it was not to be.

We use a family doctor instead of a pediatrician for our children.  The family doctor does not come to the newborn nursery in our hospital.  With our previous baby we had been very uncomfortable with the care our daughter received under the care of the staff pediatrician so we had arranged for another pediatrician to come to the hospital to do Addison’s newborn exam and discharge.  My husband had spoken to her briefly on the phone before I was admitted to the hospital on April 25.  We had never actually met in person up to that point.  

Which was unfortunate, because I think it would be a lot better to hear your newborn has a genetic disorder from a familiar face.  After introducing herself, we asked how Addison was doing.  She was kind and compassionate when she explained she had reasons to believe our son had Trisomy 21.  She shared with us her reasons and asked if we had any prenatal testing.  We told her that the prenatal screening had been negative for Down Syndrome.  She suggested we have blood drawn for a karotype to confirm the diagnosis.  She agreed to sign our discharge papers so we could go home.  That was that.  She didn’t have much experience with Down Syndrome and couldn’t really answer our questions.  She didn’t offer any literature or resources at that time.  We were in a complete state of numbness by this point.  The nurses still had Addison in the nursery for observation so we couldn’t even hold him and be comforted by the love we had for our son.  

We received no information on Down Syndrome from the hospital staff.  We did not receive any offers to talk to anyone.  Even though we had expressed concerns over his nursing we received no offers of help.  When we went to the nursery, where two techs would spend nearly an hour trying to draw blood for the karyotype, the nurses didn’t even speak to us.  At one point my postpartum nurse came into our room and I was crying and she said, “Are you upset because of what the doctor said?”  I nodded and she left.  No words of comfort or encouragement.  Nothing.  She just left.  

When I think of what a difference just one positive word would have made!  Or a little information!  We knew nothing about down syndrome and were left completely alone in our thoughts to try and imagine what life would mean to our son and our family.  It was the longest day of my life.  

We had our discharge papers from my doctor and Addison’s doctor but the hospital staff would not let us go.  We continuously asked what the hold up was.  We were repeatedly told he needed one more test.  And then just one more test.  And yet one more test.  Twelve hours they kept us there against our will and beyond our doctors’ recommendations.  And yet not one person spoke to us about our son or his diagnosis.  We finally did get home very late that night where we began the wait for the test results.

When he was four days old we took Addison to our family doctor for his newborn check up.  That doctor was the first person in the medical community to smile at us and congratulate us on the birth of our son.  How horrible is that?  Even if he had T21.  Even if it was as horrible as they portrayed, which it is not, he was still a living breathing person.  He was our son!  And not one person we had been in contact with in the hospital acted as if his life was worth celebrating.

After that doctor appointment we took our son home and we were walking on a cloud.  One more person had confirmed his heart seemed well and strong.  But our high spirits didn’t last long.  That evening another doctor called us with the results of the karyotype.  I will never forget his exact words as my husband relayed them back to me, “I am sorry to be the bearer of bad news, but Addison has down syndrome.”  

That’s when the weight of it all hit us like a ton of bricks.  While our 8 older children played in the yard we crumbled.  The burden of nine months finally being more than we could carry.  The time in the hospital.  The stress of the unknown.  And now the uncertainty of a lifetime ahead of us.  Gripping our Addison between us we literally fell to the floor where we stayed for hours crying as neither of us had ever cried before.  And that’s how our precious son was welcomed into the world.  Not surrounded by the laughter and joy and balloons and flowers and celebration of a child’s birth but into a world of uncertainty, fear and doubt.  

We both fully agree this is because of the attitude medical personnel greeted us with.  It could only be compared to that of someone who has received a diagnosis of a fatal disease.

And that is not what a diagnosis of Down Syndrome is.  Down Syndrome, while it may have its challenges, has been a wonderful gift.  We have seen our son reach all his newborn milestones on target.  We have seen him enjoy good health, in fact better than other newborns.  Not only is his heart and GI tract strong and healthy, but he has only had even one cold in his life.  

And yet, had we received a prenatal diagnosis our doctors would have recommended an abortion.  Let that sink in.  

Since Addison was born, we have entered the world of early intervention.  In this world everyone will do anything to help our son reach his greatest potential.  It is illegal to even use certain terms, such as “retarded” which might be offensive to someone affected by a “disability”.  However, when receiving a diagnosis prenatally it is standard protocol to recommend abortion.  A postnatal diagnosis of Ds is delivered with long faces and dread.  

We need to get true and accurate information about down syndrome into the hands of those who are in direct contact with people receiving a diagnosis of Down Syndrome both prenatally and post natally.  We need to get true and accurate information into the hands of the parents hearing this diagnosis for the first time.  We don’t need to tell them to abort their children.  We don’t need to tell them their children will never live meaningful lives.  We need to tell them of the possibilities.  We need to give them resources.  

We have a child with asthma.  And a child with dyslexia.  In fact, each of our children have some special challenge.  Because everyone has a challenge in life.  That’s what makes us special and unique.  This uniqueness is something wonderful to celebrate whether it be Down syndrome or something else.  Learning to rise beyond our challenges is what makes us great, not living a life without trials.  This is the message we need to share with parents receiving a down syndrome diagnosis.  

Please pass SB 654 so all these families can get started on the right foot.

No comments :

Post a Comment