Fourteen years ago today Sydney was placed on the list to receive a life saving heart transplant. This is an open account of my feelings today and of her story as I have been able to piece it together from her birth family, and some medical records from the state when we adopted Sydney.
Sydney was one of the fortunate CHD babies as she was diagnosed in utero at 18 weeks with HLHS (Hypoplastic Left Heart Syndrome). Babies with HLHS have an underdeveloped left side of the heart and aorta. This is the side of the heart that provides the body with fresh oxygenated blood. They can look perfectly normal at birth until the PDA begins to close. They have to be placed on IV medications to keep their PDA’s open to provide their bodies with oxygenated blood.
When Sydney was born the Norwood surgery (the first of the three surgeries for HLHS) was still in its infancy, most likely she would have not survived the surgery. The only option for Teresa and David – Sydney’s birthparents was a heart transplant 650 miles away at Loma Linda Children’s Hospital (LLUMC). Primary Children’s did not provide neonate transplants at this time and their recommendations had been palliative care. Teresa flew to LLUMC alone when she was 32 weeks pregnant. Leaving everyone she knew behind – no husband, no other family just her alone at the Ronald McDonald House. While she was there her Dad died – because she was 38 weeks along she could not travel home for the funeral – She stayed the course and followed her plan to give Sydney the best chance at life.
Right on time Sydney arrived – 7 pounds even, and 20” long -- perfect looking on the outside with a massively compromised heart on the inside. Teresa’s mom was able to come and be with her when Sydney was born.
Sydney couldn’t be “listed” for transplant until she was 7 days old. Her testing took a little longer and on the 24th she became active on the list. Some babies wait weeks or even months – Sydney was lucky they received an offer of a heart the next day. Little is known to us about her donor – Teresa told me that he was 2 days old. I have tried to imagine what his parents went through. How does a parent say goodbye before they have really had the chance to say hello?
We have never met or heard from her donors family yet our lives are tied together forever. Their son saved our daughter – in what I can only imagine were some of your greatest moments of grief they made the choice to donate his organs. Thank you seems inadequate – even trite. How do you thanks someone for saving your child? As I type this I wonder where they are today – is today his birthday? Do they understand the awesome gift they have provide to Sydney? How in a way their son still lives on as his heart beats in our daughters chest? His heart has never failed her it was and is the perfect match in every way – it has been comfortable there from the start beating in her little chest.
Fast forward 18 months later – I went to pick Sydney up from an Aunt and Uncles home to have her placed into our home for foster care. We were the only medically fragile home open within 2 hours of PCMC. The day before had been the third time they had called us about her – the other two times I said “no”. I knew she was meant to come to our home but (and this sounds terrible now) we had four little girls, a foster/legal risk baby boy and I wanted to be done! I was 24 years old and had five little ones at home 10 and under – I must have been crazy! I didn’t know if I could do it with one more – and one with a heart transplant. I remember calling the transplant team and while on hold praying that they would let me off the hook. Nope – Marian told me how easy Sydney would be to care for….. My heart melted when I met her and I knew she’d be staying forever --
The next day we had our first transplant clinic at Primary’s – I was scared and then I met Dr. Shaddy. Talk about a “D” personality on the DISC (look it up). I remember him looking me squarely in the face and telling me that he would not have her bounced from home to home so if we were not committed to keeping her to move her now. What a ride it has been since then –
Our Sydney girl has overcome so many difficult things – massive infections, aspiration upon eating and aspiration with reflux, a feeding tube, a port, post transplant lymphoma, a zillion heart caths and biopsies, more infections/antibiotics than I can count, 7 sets of ear tubes, and I don’t know how many days totaled to how many months in the hospital. As Sydney become more well and could attend school on a regular basis we learned that she has some learning disabilities along with a genetic syndrome. These have never slowed her down – she just does things in her own way and on her own schedule. Sydney has been able to know and love her birthparents / families through open adoption. Sydney is one of the bravest people I know. She is feisty and a fighter.
I cannot imagine how different our family would have been without Sydney. Tonight an extra prayer of thanksgiving will be said for her donor and his family, for those who made her transplant possible, and those who continue to care for her. I have heard people say that miracles don’t happen – they should meet Sydney.
If you have not considered becoming an organ donor please consider becoming one –
Much Love,
Ang
Tuesday, April 24, 2012
Watching Children Struggle
The past few months have been a mental health struggle around our house. Maggie has her issues -- that has not changed. However, something odd has been going on with Miquela -- she has been upset and having screaming fits and becoming violent. This has happened at work, her pro home, at respite and when she comes for home visits. We have done some mixing it up to see if less or more visits would make a difference and it has not. The question is if it is neurological, mental health or another developmental issue.
Yesterday Miquela had an emergent appt. with her neuro-behavior doctor due to a huge outburst and destroying her room, being suspended from work and the list goes on. As the appt. ended Miquela had a freak out about leaving and not having a treat. She began to kick the doc and refused to get up. Hospital security was call -- the hope being that she would calm down and be okay to get into the car. However, as we have seen for the past several months she continued to escalate. SLCPD was called and Miquela was handcuffed. The hope again was that she would calm however, that did not happen so she was taken to the psych unit on a "pink sheet hold". That means that she was a danger to herself and to others. I was in my yearly review for work as all of this happened. I came out to my desk to a message of all of the drama. I'm grateful to work where I do -- I looked at my co - supes and said I have to go. By the time I go there Miquela was in a obs room. She was slightly calmed. Her pro parent was giving them all of her med info, history of the past few weeks and I filled in the history. The psych unit is very efficent they had her to the floor quickly. However, she did not want to walk into the unit. Miquela stood by the door and wouldn't move. Eventually they had me come in and help get her settled with baseline vital signs, etc. We then met with one of the psych nurses to go over her history. They told us that we could visit and gave us the code number.
The pro parent needed to give her medicaid card etc for admissions so I stood in the lobby and waited with her stuff. Her phone rang and it was the agency. All I can say is I know for sure with Miquela I am done working with this agency. Her two workers have been unhelpful, disrespectful and can't communicate to save their lives. Her DSPD worker is awesome! On our way out I wanted to stop by the doc's office to make sure she was okay. We met for about half an hour and it was the doc's rec that Miquela be moved to a group home as she is a danger to herself and others. The doc had a reccomendation of another agency and I made a call to someone I know there to start the ball rolling to look for a home that might work.
I then phoned her DSPD worker -- who was glad I'd called as she was really confused because what the doc was saying wasn't matching up with what the agency had said. I told her how I had been asking for play therapy and a behavior plan since November, how the agency worker wouldn't return calls, and about Miquela's outbursts. The DSPD worker was shocked. I told her that we did need to move her and that I was concerned as the agency was upset that Miquela was in the unit.
At this point all is on hold until we can find Miquela a group home -- It is hard to move your small/big child into one but it is time. Stay tuned for updates. (This was written in Feb and I thought I had posted it).
Yesterday Miquela had an emergent appt. with her neuro-behavior doctor due to a huge outburst and destroying her room, being suspended from work and the list goes on. As the appt. ended Miquela had a freak out about leaving and not having a treat. She began to kick the doc and refused to get up. Hospital security was call -- the hope being that she would calm down and be okay to get into the car. However, as we have seen for the past several months she continued to escalate. SLCPD was called and Miquela was handcuffed. The hope again was that she would calm however, that did not happen so she was taken to the psych unit on a "pink sheet hold". That means that she was a danger to herself and to others. I was in my yearly review for work as all of this happened. I came out to my desk to a message of all of the drama. I'm grateful to work where I do -- I looked at my co - supes and said I have to go. By the time I go there Miquela was in a obs room. She was slightly calmed. Her pro parent was giving them all of her med info, history of the past few weeks and I filled in the history. The psych unit is very efficent they had her to the floor quickly. However, she did not want to walk into the unit. Miquela stood by the door and wouldn't move. Eventually they had me come in and help get her settled with baseline vital signs, etc. We then met with one of the psych nurses to go over her history. They told us that we could visit and gave us the code number.
The pro parent needed to give her medicaid card etc for admissions so I stood in the lobby and waited with her stuff. Her phone rang and it was the agency. All I can say is I know for sure with Miquela I am done working with this agency. Her two workers have been unhelpful, disrespectful and can't communicate to save their lives. Her DSPD worker is awesome! On our way out I wanted to stop by the doc's office to make sure she was okay. We met for about half an hour and it was the doc's rec that Miquela be moved to a group home as she is a danger to herself and others. The doc had a reccomendation of another agency and I made a call to someone I know there to start the ball rolling to look for a home that might work.
I then phoned her DSPD worker -- who was glad I'd called as she was really confused because what the doc was saying wasn't matching up with what the agency had said. I told her how I had been asking for play therapy and a behavior plan since November, how the agency worker wouldn't return calls, and about Miquela's outbursts. The DSPD worker was shocked. I told her that we did need to move her and that I was concerned as the agency was upset that Miquela was in the unit.
At this point all is on hold until we can find Miquela a group home -- It is hard to move your small/big child into one but it is time. Stay tuned for updates. (This was written in Feb and I thought I had posted it).
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