When I was matched with my daughter, Iris, I received medical reports indicating she had a heart condition known as pulmonary artery sling. In the few days that I had to review her limited medical information and make a decision, I spoke to multiple doctors at Doernbecher Children’s Hospital. I feel blessed that they were knowledgeable of her condition and able to give me the necessary assurance to proceed with her adoption. It was a serious, but repairable, condition. Of course, as a mom, in the back of my mind I was hoping that some information got lost in translation … that when I finally brought her home, she’d be evaluated and I’d find out it wasn’t as serious as originally thought.
Unfortunately … her diagnosis was confirmed the week we arrived back in the U.S. An ultrasound showed that she did, in fact, have pulmonary artery sling … a serious heart defect that can only be repaired via open-heart surgery.
My heart sank.
I knew, going in, that it was a possibility … but as I sat in the cardiologist’s office, with little Iris on my lap, reality set in. And the tears flowed.
Days passed and I was able to wrap my arms around our situation and Iris’ path to health. I found comfort in knowing that a brilliant surgeon at Doernbecher had experience with her condition and would be the one to operate on her.
In the meantime, Iris has been getting stronger each day, but physically she can’t do what other children her age can do. She has labored breathing on a good day and when she exerts herself, it worsens to the point where she is too tired to keep up. She stops herself. It worries me ….
Our next step was to get a CT scan, and a bronchoscopy to determine if there is any damage to her trachea. Those tests were performed a little over a week ago and the results were such that her doctors wanted to review her condition during their weekly conference in order to receive as much input on her case as possible.
That conference was yesterday. Iris’ full diagnosis is: Pulmonary Artery Sling with Tracheal Stenosis. Two serious conditions affecting her heart and airway .. each require major surgery. While there is a surgeon at Doernbecher that can perform the operation for the pulmonary sling … there is not a surgeon with experience in this location of tracheal stenosis. She will most likely undergo one surgery, repairing both conditions …. but her operation will occur at another hospital. We don’t know where yet, but the search has already begun and Doernbecher will remain by our sides through this. They are as determined as I am to find the best possible surgeons for Iris.
Yesterday the tears flowed again. Overflowed. But as Iris’ cardiologist, Dr. Laurie Armsby, so gently said to me; “This journey will be an emotional roller coaster and there will be some bad days. Today is one of them. But there will be good days too.” I believe that. Completely.
Dear Linda,
I can only imagine how heart wrenching this must be for you. I know you’ll find the right surgeon for sweet little Iris and I’ll be sending positive thoughts your way. Hang in there!
I am sending you ladies all the healing and supportive vibes you can stand. And then a little more. Much love and prayers from afar. xx Jules
Linda,
Thank you for sharing the updates on your family’s journey. You are STRONG and you will all get through this, together. I am thinking of you and hope that you will let me know if there is ANYTHING that I can do to help. Take care. XOXO Heather
Thoughts and prayers are with you, Linda. I worked at Packard Children’s Hospital at Stanford for a few years and still have strong connections there and in Palo Alto. If you end up there, there’s a home within a mile of Children’s that you might be able to use. Willing to make a phone call if need be.
I’m wishing upon the Star of Albert right now….stay tuned. Let me know if he calls.
Love you and Happy Mother’s Day. We will solve this together!
Linda: Happy Mother’s Day, and know that YOU were chosen to be Iris’s Mother! Remember to be a B w/B and BB !!!! Iris is such an amazing child. and you will help her get through this! Hey ~ maybe Ray had you go up to the ballgames in Seattle because you were meant to learn how to go up there and cheer for a different kind of “home-run?” Apparently they have a good Pulmonary Artery Sling team at the Children’s Hospital there. (Ask Doernbecher what they think of the pediatric team in Seattle.) Hang in there! You can do this and so can IRIS! We love you!!!!
We are thinking of all 3 of you today and wish you a wonderful Mother’ Day. God gave you Iris cause He knew you where the best Mother to take care of her. He watched you with Solana and knew you where the answer for Iris. Just don’t forget you have a team of doctors, family and tons of close friends behind you willing to help and most importantly having you in our prayers daily.
There are endless good days ahead, and our thoughts and prayers are with you, Iris and Solana as your little family begins this journey. Love, Sue and Big Bear