What I Didn’t Know: Adopting a Child with Severe Hemophilia

March 9, 2017 adopting a boy, Blood Conditions, Family Stories, hemophilia, hemophilia A, March 2017 Feature - Blood Conditions, should we adopt?, undiagnosed SN 2 Comments

Adoption for us was not something we thought about for years. It was something that God spoke to us in one day.

On March 25, 2013 my husband casually mentioned he had been thinking about adoption. At the time, our daughters were seven, four, and two. I was overwhelmed and had no interest in adoption.

In a matter of hours, God changed my heart. I went from being uninterested to excited. I believe that in a moment.. God literally placed this desire in my heart because just minutes before I was totally unaccepting of the idea of growing our family through adoption.

This began the scariest yet most fulfilling journey of our lives. There is nothing more fulfilling and humbling than hearing God’s calling and pursuing His plan.

After three years of paper chasing and switching from Honduras to China we got “the call”.

There was a file available for us to look at of a four year old boy. The boy had hemophilia, something I knew nothing about. It was described to me as “no big deal.” We were told he bruises easily, can’t play sports like football and just needs to be careful.

We talked to a few doctors and signed the papers to pursue our son. His referral picture was a little alarming, but under the bruises and bumps was the sweetest little face.

A few days later I came across some blogs and websites about boys with severe hemophilia. What I read scared me to death.

These boys are missing a protein that clots their blood. This can cause external bleeding as well as internal bleeding especially in the joints. The joint bleeds are extremely painful and when untreated can cause permanent damage. These boys need infusions intravenously multiple times a week.

This was definitely not something we were equipped to handle.

I spent a week in panic mode, calling nurses, doctors, even friends of friends trying to find answers.

In the end we hoped for the best and kept moving forward with the adoption.

During this time of being out of my mind in pure panic, I pictured Jesus beside me. I saw His arm over my shoulder saying, “Relax, I got this! Just trust me, sit back and watch this play out. The story I’m writing for your family is far better that you can comprehend now.”

On March 28, 2016 my husband and I sat in a government office in Guangzhou and in walked our son, Samuel. Three years worth of exhausting appointments, driving all around the state chasing papers and forms and getting signatures, taking tests, fire inspections, well water tests, writing too many checks to count, endless doctor’s appointments the list could go on and on but, the moment Samuel walked in, the stress of all of that was completely erased from my memory.

He was so scared, but we scooped him up and instantly fell in love.

During our two weeks in China, Samuel had several knee and ankle bleeds. We carried him everywhere, and used wraps and ice. The medicine he needed was not available to him. I am so thankful for a facebook group I had recently joined for hemophilia adoptions. These moms texted me back and forth advice, pictures of his bleeds and endless support and encouragement.

As soon as we got our boy home, we went to the hematology department of Nationwide Children’s Hospital. We had so many nurses and doctors come through the waiting area to meet us, including Dr. Dunn. Dr. Dunn was so kind and gentle with Samuel. She carefully looked over his knees, and I think she already knew what condition he was in.

When the blood work came back Dr. Dunn told us what we feared, severe hemophilia type A. She told us so gently, I couldn’t even be upset. We were just ready to make a plan to treat our son.

Samuel was treated with his first dose of factor that day. He has the best doctors and nurses caring for him than we could have ever hoped for.

When we left the hospital the weight of Samuel’s condition was crushing.

It was hard to breathe.

I was grieving for my son…
Grieving everything he had gone through in his short life.
Grieving all the pain he endured with no treatment.
Grieving for the family that made the impossible decision to save his life by leaving him alone at a hospital when he was three.
Grieving the idea of what I thought our life would look like.
Grieving that this boy had lost everyone he had ever known and loved and was coming to live with us, strangers.

I knew God had a special plan and purpose for this child in our lives, and we would do anything to get him everything he needed.

In the beginning we spent two days a week at the hospital for Samuel’s infusions, and eventually were able to switch to a home nurse. My husband practiced and has learned how to do the infusions, and we have been independently doing them since Thanksgiving.

Samuel is so brave and helpful during his infusions.

Samuel started preschool in the fall and is thriving. I never imagined he would transition so easily. He adores his teachers and runs to hug them whenever he sees them.

One day a week, because of our schedules, we do Samuel’s infusion at preschool. Occasionally, when it’s not going well, his teachers have stepped in to help by holding him and keeping him calm. Their love for him makes sending him to school easy!

Looking back I thank God that He protected me from knowing too much. Had I been presented with the realities of severe hemophilia in the beginning, it would have been easy to say no.

Instead, we’ve been blessed with this amazing gift. People always tell us how lucky Samuel is, but everyone that knows him knows that we are the lucky ones.

– guest post by Natalie

2 responses to “What I Didn’t Know: Adopting a Child with Severe Hemophilia”

  1. Eloise says:

    What a wonderful story and what an inspiring family you all are. My son has severe haemophilia b (we are in the UK). Fortunately my son is taking part in a clinical trial for a longer lasting factor and has been bleed free for 5 years now. What you have done for Samuel is amazing and I can tell he has brought much joy to your lives. With the medical advancements in such treatments, hameophiliacs can hope to have much longer and healthier lives. I wish you all much happiness in the future.

  2. Wonderful posts. So many moments and insights that I can relate to as we adopted a 12-year-old boy with hemophilia. There is much that can be so intimidating but thank God that He brought a community of people, others who have adopted children form China with hemophilia, and wonderful doctors and nurses that surround us with love and support. Thank you for writing and sharing your family story. Warms my heart so much with each story I read. May God continue to richly bless your family.

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2024 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.