cdh

my friend eunice gave birth to her son, timoteo on wednesday 8/8 at 6:57am. the doctors successfully intubated him, and he is stable. timoteo is diagnosed with CDH.  Congenital Diaphragmatic Hernia (CDH) is a condition in which a hole in the diaphragm allows abdominal organs to move into the chest and restrict lung development. Congenital diaphragmatic hernia (CDH) is a birth defect that occurs in about one in every 2,500 live births.

i'm dedicating this post to eunice and her story so we can bring awareness to this condition and to also keep eunice and timoteo in our thoughts and prayers as timoteo goes through treatment.

When did you first find out about Timoteo's condition?
What are the different types of tests that you took?
What was going through your mind your doctor mentioned termination?

I was seeing an OBGYN who didn't have ultrasound technologies at her office so at my very first ultrasound appointment at 12 weeks, I was excited to finally see the baby for the first time and perhaps even find out the gender.  No one told me that this would be my "first trimester screen," which is supposed to be optional (http://www.americanpregnancy.org/prenataltesting/firstscreen.html).  The sonographer was very quiet the entire time and kept focusing on a couple views of the baby that I couldn't decipher.  Something in my gut told me something was wrong, but I told myself that she was just not supposed to say anything and perhaps she was tired and not wanting to be talkative.  Unfortunately, when the doctor came in with a student to examine the screenshots, my heart sank more.  I really didn't want to feel like a scientific specimen they were examining, but I did.  Three people looking at a computer screen and whispering about me didn't feel so great. Finally, after what felt like hours, the doctor sat down and told me she had two concerns.  One was that the baby's nuchal fold measured in the thicker range, which could indicate that my baby had Down Syndrome and the other was the the stomach didn't seem to be in the right place.  I wasn't expecting to be screened for these things and didn't really know what it all meant so my heart started racing and my mind was reeling.  They suggested I consider getting a CVS - chorionic villus sampling (http://www.americanpregnancy.org/prenataltesting/cvs.html)

to rule out chromosomal abnormalities - which is like an amniocentesis but done earlier.  It was all too much information then so I decided to wait.  They scheduled me for a follow up appointment in two weeks.  In those two weeks, I did all the research one could do on Down Syndrome and went through the emotional roller coaster of thinking of that possibility.  My OBGYN called me later after speaking with sonographers and suggested termination.  I didn't think much of her offer because she said she was "supposed" to offer that option.  But she said to think about it now because it's easier rather than later since in NYC I have that option up to something like 22 weeks.  It was all too much information and too much to think about.

At my 14 week appointment, it was all the same scary silence from the sonographers.  This time the doctor pulled me into her office and explained that they were even more sure now that the stomach was in the chest cavity, which could only indicate one of two things - congenital diaphragmatic hernia (CDH) or something incredibly rare where all the organs were just flipped around.  Whatever it was, she said that my baby had a chance to live but if there were any other chromosomal abnormalities like Down Syndrome, the chances of survival diminish considerably.  I was emotionally shaken up and had dreaded to hear exactly what she said for two weeks.  Something came over me, though and right then and there I decided to go ahead and get a CVS.  If there was a 50% chance my child would live, I could fight for him.  If there was a 1% chance, I wasn't sure what I was supposed to do.  

The CVS was one of the most scary experiences I'd ever been through.  Perhaps the thoughts in my head were, "I have to be strong through this to know what I'll be facing with this baby and be better prepared for him."  They inserted an extremely large needle into my abdomen.  Watching the ultrasound screen, we were able to see the needle and she extracted some chorionic villus from the edge of the placenta.  It took quite a few people to perform this and I was squeezing Peter's hand through it all.  Several days later, they were able to tell me that the baby did not have Down Syndrome or two other major chromosomal abnormalities but they asked for my permission for them to examine the baby's DNA closer with a microarray.  At that point, I had had enough and I said all I wanted to know was that he didn't have a 1% chance.  

A few days later I met with my OBGYN, who again offered termination.  That's when she laid out her perspective - something about believing in delivering healthy babies.  She said something about me being young and that I could always have another one that probably won't have CDH since the CVS showed that the baby was actually negative for other chromosomal abnormalities.  To be honest, I was confused and weak.  My husband was the one that firmly planted his feet and said, "This is our baby no matter what."  I asked her if she had any prior experience with CDH.  I'm forgetting now but I just remember that one of her patients terminated and another delivered but did not make it.  In retrospect, I realize she really gave no real facts about CDH -- I had to learn ALL that I know about CDH through Internet research.  Even though she herself said that the two best hospitals I could consider for this baby were Columbia Presbyterian (CHONY) and CHOP, she suggested I go in for one more ultrasound by the "most famous sonographer in NYC."  We had a trip to California planned, in part, to celebrate my pregnancy as I was just approaching the mark where I was "in the clear" and able to share with friends and family I was pregnant.  I wasn't feeling too excited to share anymore at that point.

When I returned to New York, I had an appointment with that "most famous sonographer in NYC" at NYU.  To be honest, I just felt like my OBGYN was referring me to her network of colleagues.  In the end, that sonographer didn't tell me anything new and then proceeded to tell me that I had the option of termination.  This is the third doctor I'm hearing that option from.  But what about the option of trying to give my baby a chance?  He proceeded to tell me that NYU had the really good treatment for babies with CDH.  I really didn't need to hear a sales pitch.  I left thinking that appointment was a waste of my time and emotions and called my OBGYN and asked to refer me to CHONY as soon as possible.  In the end, I realized all I needed to do was call the hospital myself and schedule an appointment.  Also, I had met some moms on babycenter.com's CDH discussion group and one was able to give me her firsthand experience as a mother and the name and number of who I could speak to.  This was more help in the direction of saving my baby than I had had from anyone thus far.

How did you decide which hospital to go to?

After researching all the area hospitals online, I decided to visit both CHONY and CHOP to compare both options. It seemed that the Children's Hospital of Philadelphia (CHOP) had a huge web presence.  Every time I googled "CDH," the first links that would come up were from that hospital.   Going to CHOP would require me to relocate to the Philadelphia area a month before giving birth at the Ronald McDonald House there.  This was an ironic thought as I used to volunteer with my church at the NYC Ronald McDonald House.   However, one particular NYC mom on the babycenter discussion group I was following, sent me a message directly saying, there was no need to go to Philadelphia and that her daughter, a healthy beautiful girl received the best treatment at CHONY, Columbia Presybterian Children's Hospital.  They are the only hospital in the tri-state area that has an ECMO machine that my baby may need.  We visited both and were impressed by both.  The evaluation process was pretty excruciating though, as these hospitals won't share records and prefer to do their own screening.  I had to get a MRI scan done and all the other ultrasounds, etc. that were involved twice.  Both hospitals had very similar things to tell us but at CHOP, they were much more scientific about their calculation for survival rate, using a formula.  They gave my baby 30-50% chance of survival.  At CHONY, they didn't give me a survival rate.  Instead, they just told me that they had a 90% success rate with CDH babies, barring any other abnormalities.

As I researched the doctors at CHONY, I read about Dr. Wung in pulmonology and Dr. Stolar, the surgeon.  Together, they were able to adapt their methods to have higher survival rates in their babies.  They wait a few days for the baby to stabilize before surgery and when trying to ventilate the lungs, they employ a "gentle ventilation" system, which give the baby just enough oxygen, encouraging him to exercise and breathe more on his own. This really struck me as making sense.  Reading on, I realize all hospitals, including CHOP employ these techniques.  Although these doctors don't perform the operations themselves, they trained and oversee the doctors at CHONY now.  In the end, we decided to stay in NYC.  The doctors were great, they have a lot of experience with CDH, our community is here to support us and ultimately, the Lord's will be done no matter what.  

As a side note, although our trip to CHOP was long and excruciating, at the end of our visit we met a couple who had just given birth to a beautiful baby girl and were in the recovery process in the NICU.  I had actually read her blog before and was amazed to actually see her there.  Her story was inspiring to me and I really think the whole purpose for going to Philly for that evaluation was to meet them and be inspired.

How has your pregnancy been so far? 

Overall, my pregnancy has been healthy and uneventful.  I see an Maternal Fetal Medicine OB at CHONY, simply because of the sensitivity of the baby's condition.  But my new OB always makes me feel like I'm an A+ student at being pregnant.  Now I just have to get to labor and delivery.

Can you tell us what will happen once Timoteo is born? 

I try to keep an open mind, knowing that there's precedence and then what actually happens.  Precedence tells us that as soon as Timoteo is born, he will be whisked away to the transitional nursery. Depending on how he's doing in that moment he takes his first breath, I may get to kiss him and Peter may be able to snap a picture, but this is not guaranteed.  He will need to get to the transitional nursery asap where they will immediately intubate him for oxygen because he will have trouble using his lungs to breathe and they will insert an naso-gastric (NG) tube to release any air and administer medication to sedate the baby. They'll conduct the apgar test, take x-rays of his lungs and heart, have an echocardiogram done directly on his chest and probably much much more.  They may have resuscitate him if he stops breathing.  I won't know the details of what will happen in those moments but all we know is they, including Timoteo himself, will fight to save his life.  

Once he's stable, they'll transition him to the NICU - neonatal intensive care unit.  Peter may be able to see him in the transitional nursery or in the NICU and take some pictures and bring them back to me while I recover in labor and delivery.  They will watch him closely these first few days and depending on how he's doing, they'll either administer more medications and machines to stabilize him, or they will move to the next step which is surgery to move his organs down and patch his diaphragm.  Once he makes it through the surgery, they will monitor his lungs and breathing, and anything else he may be struggling with.  The final step is being able to teach him to drink milk orally, as up until that point, which could be many months, he will have been fed through a tube.

How does this experience change your view on doctors and all the tests and screenings that were recommended you take?

Overall, doctors are in the business for the same reason, to help you and your child.  But I've found a couple interesting things through this process.  I'm Korean American and going to my local OBGYN and the ultrasound technicians who didn't seem to have much experience with my race/ethnicity was actually felt.  Some recommendations that were given didn't make the most sense to me.  Also, I wish I knew what was being screened for prior to walking into an ultrasound room where I was completely oblivious. I was given very little information about my baby's condition, especially as my original doctors didn't know much about CDH themselves.  That's when I realized you have to be your own best advocate, find others who do know - even if that means joining online chat and support groups.  If you're confused, ask questions until you understand.  In the beginning, I assumed doctors would tell me so I'd understand, but when I didn't get satisfactory answers, I realized I had to dig.  Finally, my first OBGYN had great reviews online, and since I didn't know where to start I went to her.  There was something in my gut that just didn't vibe with her.  I probably would have delivered with her if it weren't for the CDH diagnosis.  She was a great OBGYN and is so to hundreds of people.  But just not for me - especially after finding out her real position on termination.  There were no regrets about this process though.  The struggle and the ups and downs were all part of the process the learning and has brought me to where I am now.

Does this change your desire to have more children in the future?

Not at all.  

How has your perspective on being a mother changed through all of this?

I always knew being a mother meant sacrifice and I actually always wanted to be a mother. I loved children since I was a child myself! But this experience has completely changed my perspective. Being a mother is not about learning from the past and applying it to make a perfect child. Being a mother means being totally dependent on the Lord who knows all things. My ideas of making sure my son learned to play the piano, or give to the poor or speak 100 languages are out the window. I will be thankful for having a child as a true gift from God and I will simply dedicate him to honoring the One who created us all.

UPDATE!

timoteo seunglee baek 

timoteo is 8lbs 1oz and 20 inches long.  the doctors are doing lots of tests and checking his progress to schedule is surgery to repair his CDH soon. eunice started a blog to share her story and peter has been constantly updated the blog so everyone can follow timoteo's progress.

check it out here!

please keep the baek family in your thoughts and prayers.