My Infant Has A Serious Medical Condition And Can’t Come Home. Help!

Simone, 7 months
Trach and G-Tube

 

 By:  Davida Grant

You wait nine months for your new bundle of joy.  You get your finances in order, buy and read every baby book out there, get the baby room together, sing and talk to your belly first thing in the morning and just before you go to sleep, pick out baby names, and shop for the cutest outfits EVER.  In essence, you do everything to prepare yourself for your mini me.  The contractions start and through the discomfort you can’t help but think, soon s/he will be here.  You simply can’t wait to meet him or her.  You deliver your baby and you’re overcome with joy. This new chapter of your life begins. Then you get the news.  Your baby has a medical issue and won’t be able to come home.  And, not only will you have to go home without your baby, your baby likely will have to stay in the hospital for months.

Nothing, and I mean, nothing can prepare a new mom for this.  It happened to me three years ago with Simone.  My husband and I were at the hospital, ready to take her home, when her doctor said that she noticed Simone would cough every time she drank milk. This was not typical behavior, so she wanted Simone to see a specialist immediately.  So off we went to Children’s Hospital where they promptly ran a series of tests.  After about an hour, a team of doctors and I mean a TEAM (at least 5) entered Simone’s room to discuss the results.  At first, they couldn’t pinpoint the issue.  They said it could be this or that or the other and needed permission to do even more tests.  I was numb.  Finally, they figured it out. Simone was born with a laryngeal cleft, which in layman’s terms means she had a hole in her windpipe.  Whenever she’d drink milk, some would pass into her trachea because of the cleft.  She simply could not go home until the issue was addressed.  The plan was to repair the cleft (sew it up), but this couldn’t happen until she was 3-months old.  The affected area was simply too small.  In the meantime, she’d be fed through a nasal tube.  Because of the cleft, she had quite a bit of stridor, which affected her breathing.  So they recommended that she stay in the hospital.  I was told I’d have to wait at least 3 months before I could bring my baby home.

When I heard these words, it was like I was having an outer body experience.  I was trying to focus on what the doctor was saying, but I couldn’t get it.  Simone looked perfect.  Of course she was coming home with me.  And if these doctors thought I was going to go home without my baby, then they had another thing coming! Well, after multiple conversations, reality set in and I had to accept the fact that my baby had a very serious, rare condition and would not leave the hospital. I had to accept that she’d be in the hospital for at least 3 months and would have to have several medical procedures.  Yes, I had to accept it.  How?

There’s no playbook available to help a new mom handle this situation.   I had so many emotions coursing through my body.  I was angry, sad, scared, afraid, skeptical — and these are just a few.  I needed help and didn’t know where to turn.  I was lost. So I prayed, putting it in God’s hands.  I also resolved that I had to get myself together.  Simone needed me.  Yes, the doctors and nurses would care for her, but Simone only knew me.  I was her connection to this world.  I would not fail her.

I wish I could say that Simone simply stayed in the hospital until she was 3-months old, had the surgery, and came home.  It didn’t work out that way.  Simone’s respiratory issues intensified so she had to have a tracheostomy.  Then she developed pneumonia, delaying her surgery.  Then she had to get a G-tube.  It seemed that every few weeks something else would go wrong.  And if all of this wasn’t enough, my father died.  Talk about throwing me into a tailspin.  I had been so focused on my baby that I couldn’t be there for my dad as he battled cancer.  I couldn’t help but wonder what I’d done to deserve this.  While I had lots of support during this period, the truth is I didn’t know how to let anyone in.  I didn’t think anyone else could get it, not even my husband.  They weren’t in my shoes.  Only my faith sustained me.

Trust and believe, when you ask God for help, He will answer.  I asked him to guide me and He did.  My spirit directed me to end my “pity party” ASAP and become the chief advocate for Simone.   This would give me purpose.  I’m a lawyer, so I’m trained to ask questions.  I’m trained to analyze the facts.  So that’s what I did.  My daughter’s condition was rare, so I had to ensure that the choices we made for her care were the best.  I researched and confirmed EVERYTHING I was told about her condition and recommended care.  Thank God for the Internet!  I mentioned there was a team of doctors assigned to Simone.  All of them were not good.  I had to get one removed from the team because she recommended a surgical procedure that was not necessary. Thankfully, I challenged her findings.  I actually raised a ruckus. No one was cutting open my baby unless it was ESSENTIAL! Ultimately, the medical team concluded that I was right.  Simone didn’t have to have THAT procedure and that particular doctor was wrong for urging me to simply agree.

Finally, when she was six-months-old, she came home.  She had to go back and forth to the hospital for follow-up procedures until she was about fifteen months, but all issues were resolved.  Yay!

Looking back on it, I have some key take aways I’d like to share. They may help other moms in this situation.

1. Babies are fighters.  You’d be surprised at how strong and resilient infants are. They will fight to survive.
2. Educate yourself on your child’s condition.  Doctors can get it wrong.  Do your best to fully understand the medical issue and recommended solution.
3. Don’t be afraid to challenge your doctor’s recommendations. Ask questions.  It’s your doctor’s job to explain what’s going on.  If you don’t agree, challenge it.  Get a second opinion if necessary.  The more you know and are involved in the medical decisions, the better off you’ll be.
4. Trust your instincts.  You may not be an expert, but your intuition is EVERYTHING!!!!! Never doubt it when it comes to your child’s care.
5. Ask for help.  There is another mom in your shoes.  Seek one out.  We’re here.

If you’re in this situation, this may be one of the most difficult things you’ll ever face.  Just remember, you are not alone.

Have you ever faced such an ordeal?  How did you handle it?

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