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WBW~ Breastfeeding in a Personal Disaster…. C.Michael’s Story

SendPicture14 August 2nd…..Today is my son’s 24th birthday. Yeah…I’m old 😉 This is not really the theme of WBW but I will take this opportunity to tell his breastfeeding story on his birthday.

In 1985, I gave birth to my second son. C. Michael. He was 37 weeks and behaved like many     near term babies… Breastfeeding got off to a slightly delayed start but then was awesome and without problems! Yay!

I wish C. Michael’s physical health was the same way.

C.M. was born with craniosynostosis.  Specifically, saggital craniosynostosis. Infants skull bones are purposely NOT fused together at the time of birth so the head can mold as baby makes his way down the birth canal and into the world. The different skull bones will overlap easily along the suture line so as to fit thru the pelvis. These bones then gradually reshape and the sutures eventually fuse.

My son’s saggital suture line was prematurely fused…causing a misshappen head. When there is a premature fusion, the growth can only occur parallel to the fusion. The saggital suture goes from the anterior fontanel along the top of the head to the posterior fontanel. Parallel growth would cause his head to be really oblong, or football shaped.

We took him to 5 doctors to decide if we would have corrective surgery… Yes that’s right…. it had to be OUR decision. Although this is a birth defect and causes a visual deformity, it does NOT affect healthy brain function UNLESS there is fusion of more than one suture and growth is impeded. So it is cosmetic surgery.

We decided to go ahead with the surgery at age 3 months and had everything arranged at CHOP (Children’s Hospital of Philadelphia). The craniofacial team was amazingly supportive. I was so very scared. My husband and I could not sleep. I hadn’t been able to sleep well since he was diagnosed. How many new mom’s tell you the baby is sleeping but they can’t sleep??? I’m not going to get into the whole surgical procedure… but the  main point of this story is how breastfeeding not only provided C.M. with the best nutrition and immune system protection, it also saved me thru my son’s ordeal.  My husband was able to pre-donate blood so we both felt like we were doing everything physically possible as his parents to help him tolerate and recover from this major surgery.

I was so pleased to be able to sleep right next to him in the hospital. We had to go in the night before and the he was not allowed anything after 4 am… he could nurse up to that point. I woke him to nurse around 3 am. It was very bittersweet. I was crying and he was happily nursing, not know what was coming next. It was difficult just to see the IV placed, let alone the actual surgery.  I was so grateful and happy they had done alot of pre-op procedures the night before when I could nurse him after each study. Now , when they wheeled him off to the OR, I was almost happy he had been slightly sedated because as hard as it was, I could never have handled him screaming at that point.

While he had the surgery, I headed first to the pumping room to try and get as much milk stored as possible. I had not been able to pump well before this so I had limited expectations. It was the first time I had used a hospital grade pump so I had much better volume than I expected. I stored a couple bottles and was feeling actively involved in his recovery already!

They called us to meet him outside of recovery a couple hours later. It was very difficult to see his head swollen and heavily bandaged. He had had a blood transfusion once already in the OR and they expected he would need more. Apparently the bone edges ooze when cut.  We took turns with him until he wasn’t groggy any more, then, once awake…. I rarely left him.  I was told he had to have a little bit of an electrolyte solution in a bottle first before I could nurse him, just to make sure he didn’t vomit.  He was ready to nurse in about another hour. They took him out of the crib, with his massive head bandage, black and blue eyes and 2 IV lines….place him in my arms and we gently rocked and nursed.SendPicture12

I felt completely lost, even as a nurse or especially as a nurse…. because seeing your child like that is very difficult. I kept thinking all the worst possible complications would happen to him. I wanted to keep him safe, protect him. I struggled with tremendous guilt, thinking I must have done something to cause this to happen… It must have been my fault.  Many parents go thru that, I’m sure. Breastfeeding him thru the hospitalization, two more blood transfusions and recovery period helped me feel like I was actively healing him. My husband felt similar thoughts because they used his blood for the first 2 transfusions. It was an empowering feeling.

I’ll close by saying that finally being finished with the decision process, the surgery completed (sucessfully I’m happy to say) and on the recovery road also cured my sleeplessness.

The night nurses at CHOP laughed at me! There I was, sleeping right next to my precious brave 3 month old post-op son…and they had to wake me up to tell me he was crying to feed in the night.  😉

What a handsome guy now!

What a handsome guy now!


6 Comments Post a comment
  1. Johanna S #

    Wow, what a story… Thank you for sharing. I can’t even imagine all the thoughts you had before and during the surgery. Being a nurse probably made it worse.

    August 3, 2009
  2. Wow, what a powerful story. Thank you so much for sharing it!

    August 3, 2009
  3. What an amazing story. I’m glad that breastfeeding helped you both through the process. And a happy (belated) birthday to your son! 🙂

    August 3, 2009
  4. My daughter was hospitalized at 3 mos for a fever. Nothing compared to your story but I remember the helplessness I felt when they had her in a separate room and told me I couldn’t come in as they were trying to insert a catheter. She screamed and screamed and I watched her through the glass and cried and cried – my insides felt like they were being ripped out. They couldn’t insert the catheter so they taped a plastic pouch onto her. I wondered why they hadn’t just done that in the first place.
    Breastfeeding her was all that kept us both okay in that situation.
    So I can empathize, in my own small way.
    Thanks for sharing that Melissa. 🙂

    August 4, 2009

Trackbacks & Pingbacks

  1. A Formula Rep turned my Maternity Leave Injury into a new career as an IBCLC? Really? « Stork Stories… Birth & Breastfeeding
  2. My Breast Pump and I didn’t get Along « Stork Stories… Birth & Breastfeeding

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