Shiloh

Our third son, Shiloh Bradford, was born still on November 14, 2013.

*******
This is an abbreviated story, and not the one I wanted to write….

Back in April when I found out we were expecting again, an avalanche of emotions rolled through: but I couldn’t wait for Sebastien to be a big brother!

My 8 week appointment was nerve wracking. And the PTSD kicked in, causing me to absolutely break down in my doctor’s office while going over my previous pregnancy history. Luckily we discovered there was only one baby, a perfect little gummy bear.

Two weeks later my MFM ordered blood work for one of the new free cell DNA tests, which checks for the 3 main trisonomies, and as a bonus can determine gender. Everything came back perfect and we were having another boy.

For once I was able to experience what a normal pregnancy was like. Pure bliss.

At my 18 week ultrasound though, the doctor couldn’t get a good look at the baby’s heart–it looked slightly displaced. The next week I saw a pediatric cardiologist for a fetal echo. The heart looked good, normal function, but it was pushed over to the side. We also discovered what looked like a cystic mass in the baby’s lower right lung. The cardiologist thought it to be either a congenital diaphragmatic hernia (CDH) or a congenital cystic adenoid malformation (CCAM). If it was as CDH, the doctor said it was a rare form, appearing on the right. But he couldn’t confirm what we were looking at.

My MFM confirmed 2 weeks later that it was indeed a CDH. Devastated. And so began the weekly appointments and the end of my normal pregnancy.

Since we would need to deliver at a specialty hospital we started looking at our options. UVA was the closest place to offer ECMO treatments, a sometimes standard procedure for CDH babies. So we went for a consult there—and unfortunately they didn’t really give us any information or treatment plans.

The next week my MFM confirmed that we were also dealing with Hydrops–another devastating blow. We realized then that the likelihood for this baby’s survival was rapidly dropping. We went ahead and did amniocentesis since many CDH babies have genetic issues. While there she also did an amnio reduction since I developed polyhydramnios.

We also decided to have our information sent to CHOP, one of the major facilities for dealing with CDH. They gave us zero hope or options. Basically we could have a compassionate birth anywhere, and just love the baby till he died, or we could try to save him even though he probably wouldn’t make it beyond a few days. We left there distraught.

At that point we decided we might as well have the baby at a place we wanted to be, rather than going to Philly or elsewhere. A friend then mentioned a doctor in Miami who is known for experimental fetal therapies. I immediately contacted him. He received all my records from UVA and CHOP. He wanted to try and knew exactly what procedures he’d do!!! We had our first glimmer of hope.

Off we went to Miami. They started the ultrasound. The baby’s heart had stopped. My heart dropped. I was 31.5 weeks along.

They said it had most likely stopped in the previous 48 hours–while we were traveling.

Around the corner we went to labor and delivery and the induction began. About 48 hours later, Shiloh Bradford was born, weighing 3lb 9 oz. We are getting a full autopsy, but who knows if we’ll learn what happened. The amnio results showed no issues.

I’m sad obviously. Sad that Sebastien has lost another brother. One thing keeps me ok–Shiloh has a big brother in Sam up there to take care of him. Definitely still hurts. Badly.

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4 thoughts on “Shiloh

  1. Shelly Moore says:

    We are so sorry for the loss of your precious baby boy. We have also walked the CDH journey & sadly also know the pain of the loss CDH brings. I pray our angel Jayden was there to welcome Shiloh into Heaven. We will be keeping your family in your prayers.

    Also, if you have not already joined, there is a fantastic organization called CHERUBS that supports CDH families worldwide. I hope you will join as there are many there who have been down this road & are great support. I don’t know what we would have done without them!

    CHERUBS

    http://www.cherubs-cdh.org/

    Our deepest sympathies,
    Shelly Moore
    Grandmother to CDH angel Jayden, 02/19/2010 – 03/14/2010

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