Based on the tests, we now have a better understanding of Ryan’s anatomy and with that comes some disappointing news. At birth, we were hoping Ryan had a normal heart that was just outside his chest (ectopic cordis), but unfortunately the doctors have confirmed their earlier suspicions that in addition to ectopic cordis he also has Hypoplastic Right Heart. This means his right ventricle is severely underdeveloped.
A quick primer on hearts: The function of the right side of the heart is to collect de-oxygenated (blue) blood, in the right atrium from the body (via superior and inferior vena cavae) and pump it, via the right ventricle, into the lungs so that carbon dioxide can be dropped off and oxygen picked up. The left side collects oxygenated (red) blood from the lungs into the left atrium where it moves to the left ventricle which pumps it out to the body (via the aorta). In Ryan’s case, since the right ventricle is underdeveloped, it cannot pump blood to the lungs. Therefore, the left ventricle must pump blood to both the lungs and the rest of the body, a situation that cannot be sustained long term.
For Hypoplastic Right Heart (HRHS) he will need a series of surgeries. The first stage will be a bi-directional Glenn procedure. In this operation, the superior vena cava is ligated from the heart and connected to the pulmonary circulation. This stage typically happens between 4 and 6 months. The second stage will be a Fontan procedure; the functional effect is to redirect venous blood from the lower body (through the inferior vena cava) away from the right atrium to the pulmonary artery thereby decreasing the mixing of oxygenated and deoxygenated blood. The left ventricle is now able to perform its traditional job, supplying the body with oxygenated blood, while the passive systemic venous pressure (lungs inflating) performs the traditional job of the right, passing deoxygenated blood to the lungs. This stage typically happens between 2 and 4 years.
Of course this is all in addition to Ryan’s other issues, which include ectopic cordis and omphalocele (exposed stomach). All three of these issues together will make things more challenging. Leighann and I are dealing with the news.
The doctors meet Monday to discuss our next course of action. On a positive note, the doctors were able to turn the ventilator down more on Satruday as Ryan continues to wean off this machine. Breathing on his own is an important step in his progress.
Please pray for continued wisdom for the doctors.
Comments (17)
We are continuing to pray for Ryan. God formed Ryan in your womb, and he has a plan for him. I pray he will keep getting stronger and wean off the ventilator. Stay strong Leighann and Henry! You are doing an amazing job!
Maggie directed us to your blog. Little Ryan and your family continue to be in my family’s thoughts and prayers. He is one adorable little fighter 🙂
We pray for Ryan…that he will continue to get stronger. We pray for wisdom for the doctors in determining the best course of treatment. We pray for your family…that God would comfort you and guide you through this process.
Love, Brent and Julie Speier
I am praying for all your requests and that God would give you all a “peace that surpasses all understanding” as we lift your little boy before the Lord! Hugs from afar
I also found you through Maggie. I just want to let you know that your beautiful little boy is in my thoughts. I will be thinking of him often, and hoping for him to continue to get stronger. He really is a beautiful baby!
I know God has this under control and his will, will be done, but my heart aches for you all and I will continue to pray for God’s light to shine throug this all.
Thank you so much for letting us see Ryan, we are praying.. Hang in there.
Kelly & Jeremy Kortright
Praying for the 2 Hobbits, the giant, the giant’s wife and the little king. You all are in my thoughts. May God continue to keep you in His marvelous care.
Much love, Aunt Amelia
Ryan and your family are in my thoughts as you cope with his newest diagnosis and prepare for the surgeries ahead. He is a beautiful boy and such a little fighter!
Jenny (friend of Maggie’s)
I’m praying for little Ryan and Leighann’s recovery!
God will be glorified in all of this, and all of the bumps in the road on the way.
*hugs*
“Do not be afraid because of this vast army. For the battle is not YOURS but GOD”s!” 2 Chron 20:15, I hold on to this verse when the mountain in front of me is so much greater than me.
“We wait in hope for the Lord; he is our help and our shield.”
Psalm 33:20
“He will cover you with his feathers & under his wings you will find refuge; his faithfulness will be your shield and rampart.” Psalm 91:4
Praying for his peace to surround you, his wisdom to guide you both and his joy to be your every moments strength.
One question… maybe Aunt Johanna can answer this… how are the big sisters, praying for them as well?
Sarah
I’m continuing to pray for Ryan and I’m sure you don’t have a ton of time to sit around and read blogs right now, but I wanted to pass one blog on to you: http://simmonsfamilyupdate.blogspot.com/
This little boy has HLHS and there is a list of other little heart babies who are also dealing with HLHS and various other heart issues on their blog. It might be an encouragement and a source of support for you guys as you enter these unchartered waters. Thank goodness nothing is a surprise to God and that he is in control of everything! Praying for wisdom for you and the doctors, praying for healing for Ryan and praying that your hearts will be filled with peace that passes all understanding!
thanks for the update!!! you have no idea how many people are praying for you all…but i hope you can feel the love.
praying for each of you, for wisdom for the doctors, for rest for you guys, and for continued strength for Ryan!!!
Hello, I am an online friend of Maggie’s and I wanted to let you know that I am praying for Ryan and for all of you!
Karen Twombly
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My friend, Melissa McGee, shared your story with me today! I will be praying for Ryan, the Giant, the 2 Hobbits and you as you travel your journey ahead! May you continue to focus on the Lord and His will! ~ Alison Johnson
Hi, just came across your blog from a Belgian (!) newspaper website (http://goo.gl/kioWt). This is truly a miracle baby and a great testimony too. Hope it makes people thinking twice before considering abortion. God wanted this boy, so who are we to decide different.
Regards,
Paul
The Netherlands