Tuesday, February 8, 2011

One sonogram...

Saved my son's life.

We were lucky...or blessed.  You decide.

A very good friend of my family just happens to be one of the leading perinatologists in North Texas.  He generously offered a 3-D sonogram to us as a gift.  So at 27 weeks, Gray and I met him, his wife, and his three children at one of his offices on a Sunday afternoon.  It was supposed to be a fun outing, a chance to see Keegan's beautiful little face before he came into this world.  And it ended with too many broken hearts - Keegan's, ours, those of our family and friends who already loved him as much as we did. 

Our friend had the unforunate task that day of telling us that Keegan's heart had not formed correctly.  Of course, we all assumed it could be fixed with surgery.  It should have been able to have been fixed with surgery.  That visit sent us into a tailspin of visits with fetal cardiologists, cardiothoracic surgeons, and neonatologists.  We scheduled an induction, pre-registered Keegan with the NICU, scheduled his first surgery, and reserved a bed in the cardiovascular ICU at Children's - all before he took one single breath. 

We had the luxury of educating ourselves, planning, and trying in vain to prepare ourselves mentally, physically, and emotionally for Keegan's birth.  Nothing can ever prepare you for having a child who risks dying simply by being born.  For going through labor knowing that the first time you hold your son might also be the last.  For standing watch over your baby's bed with his chest splayed open and connected to more tubes than you can or want to count. 

And yet, knowing in advance literally saved Keegan's life.  The NICU at the hospital where he was born knew he was coming but was wholly unprepared to stabilize him, not because they were incompetent but because he was that sick.  I doubt Gray will ever forget walking up behind the NICU attending on the phone with the Children's transport team, telling them that in the 20 minutes since Keegan was born, they were already "losing him."  Or the relief in the faces of the NICU team as they signed off responsibility of our son to the nurse who would try to keep him alive in the morning rush hour traffic down to Children's.  Despite all that, the fact that the team at Children's had "seen" his heart via a fetal echocardiogram and had at least some time to prepare saved time that Keegan did not have. 

Just one sonogram.  A non-invasive, no-risk look by a trained physician that is not standard in prenatal care in America.  A test that many insurance plans do not cover.  A test that some parents actually choose not to do.  Not to mention the thousands (like us) who have sonograms monitored by technicians or doctors who have not been sufficiently trained to recognize the single most common birth defect in the world. 

To us, it was more than just a sonogram or just a gift.  It was the gift of a fighting chance at life.  And there is no reason it can't be that way to the almost 40,000 babies like Keegan born every year in this country.  If you are pregnant or know someone that is, spread the word.  Congenital heart defects are scary.  Not knowing about them until a baby is born or later in childhood doesn't have to be.

Based on some conversations I've had recently and the comments below, I felt compelled to add a footnote to this post for clarification.  We had 2 sonograms at our OB's office and were told Keegan was "perfect" before his diagnosis.  Another heart mom told me today of having 2 sonograms at the hospital without a prenatal diagnosis.  The first thing this highlights is the need for greater education for sonographers and general OBs in diagnosing the most common birth defect in the world.  Yes, there are over 40 known defects and endless combinations thereof, but if you know what a heart should look like at 20 weeks, most structural defects should be detectable.  Secondly, we must remember that prenatal diagnosis doesn't always mean that a defect is "fixable"; many to this day remain fatal, whether the diagnosis is known before or after birth.  If nothing else, knowing in advance gives a family and medical team the opportunity to prepare themselves mentally, emotionally, and physically for the challenges that lie ahead.  And that can mean all the difference, whether your child makes it home or not.  I firmly believe that I can be a better mother to my son in the moment if I'm not also worried about educating myself on what is happening and how best to advocate for him in the midst of having to emotionally come to grips with his condition.


Becky Cudlipp said...

Maddie - We had a neighbor/friend whose son was born with a heart defect (actually it's a combination of 4 - can't remember what it is called). She had a typical, basic level 1 sonogram, in which they did not see the defects, so he when he was born, no one knew about them until a few hours later. When it was discovered he was rushed to Children's where he had surgery. He had a total of 3 surgeries (that's standard) to correct the defects, and is now doing well. How much better prepared would they have been (both logistically and emotionally), had she had a level II sono where the defect could have been diagnosed.

Becky Cudlipp said...

I think it was Hypoplastic Left Heart Syndrome with Transposition of the Great Arteries...

Stacie said...

Awesome post!! Thanks for sharing this, Maddie.

Much love,
Stacie Smith