Monday, November 21, 2011

Our Little Hero

~ Jordan Joseph LaFond ~
October 18, 2011 - November 21, 2011
One Tough Little Nut

Even until the very end, Mommy and Daddy were pulling for Jordan, their tough little nut. A condition known as Congenital Diaphragmatic Hernia, or CDH, claimed our son's life. Although he was the biggest baby in the NICU and a tenacious fighter, pulmonary hypertension was too much to overcome. Jordan received the best treatment in the world for this condition at Children's Hospital of Philadelphia (CHOP).  CHOP was the only home that Jordan knew in his short life and the medical team became our family.  CHOP was fantastic and Jordan was in the right place.  Even the best doctors in the world cannot grow pulmonary vessels.

Big Brother Caleb Giving Jordan His Last Goodbye Kiss
Jordan is our hero.  Our little baby fought through every stage of treatment for over a month.  During the healing phase, when they try to wean life support, Jordan responded fantastically for the first 48 hours.  That is the ugly nature of CDH though.  Jordan lacked the amount of pulmonary vessels necessary for oxygenation.  CHOP can help heal lungs, but they cannot grow vessels.  Because the heart could not push blood to the lungs, the right side of the heart became too strong - mixing both oxygenated and unoxygenated blood.  It was a vicious cycle that proved to be too much.

Jordan fought to the very end.  He inspired his parents, family and friends along the way.  We could never give up because Jordan inspired hope in us.  The first and only time we ever had the privilege of holding our son was right at the end.  It would have been impossible to summon the strength to hold our precious child as he struggled for his last breaths, except that we owed it to him for fighting so hard.  Words cannot describe how much we will miss his presence, but we know that Jordan is not struggling anymore.  He has fought his fight and he inspired so many people.

So many people will be deeply affected tonight and in the weeks to come.  Please accept a warm hug and our deepest gratitude to all who prayed for Jordan.  Our family has taken great strength in those prayers.

Goodbye for now Jordan.  Thank you God for our son.  Until we meet again, we will take strength from having the opportunity to have known our little hero.

Baby Jordan's Last Day & First Time in Mommy's Arms


  1. I'm so sorry for your loss. He's a beauty.

  2. such precious pictures. deeply saddened and in awe... I am praying for your family, the Lord reigns.

  3. May jordan be free <3 Praying for his wonderful family. He will always have a special place in my heart <3

    catie stebbing
    C.O.L.E.’s Prayer Team

  4. I came across your blog through our mutal friend Amanda M, and have been reading it everyday. I feel that in the short time you were blessed with Jordan, I feel I was also part of the fight. I am so sorry for your loss and will continue to keep you in my prayers.

  5. Dear LaFond family,

    I was given the link to your blog from Sarah Mitchell and wanted to reach out and say how sorry I am for your loss. I describe CDH as a two-headed monster - one side is a nice monster and the other side is a nasty one. Every family going through the CDH journey meets both monsters. My heart sinks every time I learn that the nasty monster got its way.

    The CDH community is a large, caring and supportive network and I hope that you have already met other CDH families to lean on. I am the current president of Global CDH and also the mother of CDHer Jaxson. He was also at CHOP and the doctors, surgeons and nurses are truly amazing there.

    I will keep you and your family in my prayers and if you need anything please let me know.

    ~Sarah Mayer

  6. Michael, Brandi, and Caleb,
    May God comfort you during this difficult time. My hope is that one day there will be a cure for CDH, pulmonary hypoplasia, and pulmonary hypertension! You are amazing parents and Jordan touched so many lives.
    Taryn Edwards

  7. Liebe Familie
    Die Geschichte des kleinen Jordan hat mich sehr berührt. Ich bin durch Zufall auf Ihre Seite gestossen und jedes mal muss ich weinen, wenn ich mir die Bilder Ihres wunderhübschen Sohnes anschaue. Die Geschichte geht mir sehr nahe, da unser Sohn Yanis am 18.10.2012 geboren ist und irgendwie blicke ich in das Gesicht von Jordan wenn ich Yanis anschaue. Die Gefühle bei der Geburt sind noch so present und ich kann jede Minute mit Ihnen mitfühlen. Ich bin dankbar, dass Jorden in seinem kurzen Leben soviel Liebe erfahren durfte. Ich wünsche Ihnen ganz viel Kraft und Liebe. An Yanis seinem Geburtstag wird jetzt immer auch eine Kerze für Jorden brennen. Herzliche Grüsse Marion