Your Baby Most Likely has a Lymphatic Malformation: Say What???

I have mentioned before that my second pregnancy was, to put it mildly, worrisome.

I discovered I was pregnant with my darling daughter just about the exact moment I started slipping into a dark hole of worry about my son.

Autism was starting to dominate my thoughts.

And then ... I find myself sitting in a boatload of worries for a baby growing inside me.

It was May 2005. I was getting an ultrasound, my husband at my side, when my wonderful OB says:

Um, I don't mean to stress you guys out, but there is something on the baby's face or neck.

Um, WHAT??????

She wanted us to go to a "fetal development specialist."

Shit.

My head was spinning as I listened to her. I tried to focus on the "positive." Whatever this "thing" was didn't appear to be very big. It might be something they could "take care of" right after she was born. Something they could "drain."

But when we left the appointment, I saw the fear in my husband's eyes.

He is a physician.

He was panicked.

Shit, shit, shit.

We had to wait for our appointment with the fetal development specialist (AKA a "high risk" OB).

We both spent hours on the computer, pouring over articles about facial deformities.

Unfortunately, we spent those hours alone. He was on the computer by himself. I was on the computer by myself.

We never really came together in our fears.

We were walking through a no-man's land of absolute dread.

And, as we walked, we looked at our beautiful son and wondered:

Why in the heck is he not developing like he should?
Why does he have all of these weird little quirks and behaviors?
Why doesn't he wave?
Why doesn't he point?
Why doesn't he imitate?
Why doesn't he TALK?

And, again, for the most part, we worried, and anguished, alone.

We had multiple appointments with two different high-risk OBs. It was like a nightmare.

The high-risk OB who would eventually deliver our daughter told us that he believed she had a lymphatic malformation on the lower part of the left side of her face. Both my husband and I already had decided, based on all of our reading, that a lymphatic malformation was the most likely answer, so we wern't surprised by the news.

As explained on the Children's Hospital of Boston website:

LM is a sponge-like collection of abnormal channels and cystic spaces that contain clear fluid. ... Lymphatic channels sprout from veins in early embryonic life. Protein-rich fluid normally filters out of blood-filled capillaries into tissues throughout the body. The lymphatic system serves to transport this fluid back into the venous system. ... Although the precise cause is unknown, LMs are believed to be caused by an error in the formation of these tiny, thin-walled sacs and tubes in the embryonic period. No known food, medication, or activity during pregnancy can cause an LM.

An error in the formation of .....
Bring on the guilt.
Bring on the depression.
Are you trying to tell me something God?
Did you never want me to have children in the first place?
I got to the point where I was so sure bad news was waiting around every corner that I didn't even want to go to the mailbox.

OK, so back to reality ... The definition noted above is a fancy way of saying that sometimes lymphatic channels don't form correctly, and the result is like a traffic jam of fluid. LMs can occur anywhere in the body, but they frequently occur in the face and neck region. They can be big, medium, or small--sometimes so tiny that you don't even notice, sometimes so large that they wrap around a child's entire face. They sometimes block a baby's airway and cause profound disfigurement. If large enough, LMs can basically suffocate the baby in utero or be deadly upon birth.

As I waited for my baby to be born, I spent hours and hours reading about LMs. I joined an on-line LM support group, and while my son was at preschool--three mornings each week--I read the postings of parents whose children were severely affected by lymphatic malformations.

I went to see the doctor once every two weeks and had an ultrasound at every appointment. He wanted to see if the LM was growing. He was cautious, but encouraging.

The lymphatic malformation did not appear to be growing.

Everything else looked good. The baby's head measured perfectly. Heart looked great. Lungs were doing what they were supposed to do. Kidneys looked fine.

And, at one appointment, we learned something that was a HUGE bit of good news:

The baby was sticking out its (I didn't want to know gender, even after ALL those ultrasounds!) tongue. Sticking it out and in, out and in.

What a relief -- because I knew that many LMs that obstruct the airway keep a child from being able to withdraw his/her tongue. It just hangs outside the mouth because the LM is such an obstruction that there is nowhere else for the tongue to go.

So, that bit of news definitely was welcome. It meant our baby's airway most likely was not obstructed.

I tried so hard to focus on all of the good stuff, even though I also heard the following words from the doctor:

You need to deliver the baby in a hospital with a level-four NICU. I want to have the NICU team standing by in case the baby needs to be intubated.

I have had more than my fair-share of dealings with the five stages of grief.
As I read about children with large LMs -- about their trachs and G-tubes, about their multiple surgeries and severe disfigurement, I hit that bargaining stage pretty damn hard.

OK, God, if you would just let this baby be born breathing without any problems -- just able to breath and swallow -- I will stop worrying so much about Daniel and appreciate him for who he is.

Well, my spiritual life ain't what it should be, and as I've noted, I think God mostly listens and doesn't intervene. But ...

If he was listening, and if he did intervene on my daughter's behalf, he did one heck of a job.

She is beautiful.
And amazing.
Smart and funny and, oh, so filled with energy.
She is a singing, dancing delight, even though she sometimes drives me crazy with all of the drama.

Her LM definitely was noticeable at birth, but it did not cause her any problems.

You can see what it looked like in the picture of her the day she went home from the hospital.



Her LM has not caused her any problems in her five-plus years. It still might someday--they sometimes swell during illness or periods of great hormonal change, like pregnancy--but the fact that it hasn't swollen yet is a great sign. It turns dark when she has the slightest bit of injury or trauma to that part of her face--like when she collided with another little girl in her dance class a few weeks ago. But the color goes away in time.

Most of the time, nobody would even know it is there.

She is absolutely beautiful.




But going back to that bargain with God .... I definitely have not held up my end of the deal.

I want so much more for my son.
I HATE how he is so frustrated by his inability to speak.
I want him to be able to write a letter to me some day, even if it is just a short note with simple sentences.
I want to hear him say "I love you."

This life of his is not fair, and by extension, his family endures unfairness as well.

And, yep, God, I ain't happy about it.
I suppose that as my frustration grows, I should be on my knees that much more often. Especially when I have days like I did yesterday, when my son is pushing all my buttons and I find my frustration level growing in volumes. Sigh ....

It is not as if God promised anything to anyone, in terms of this life here on Earth.

And I know there are times when He must be so disappointed in me--at my impatience, at my self-centered woes of unfairness.

But I hope He also knows that, at the end of the day, I realize that being my son's mother has made me a better and stronger person ....

even though I still have a very long way to go.