Real life: Meet Hadas­sah

One lit­tle girl born with cran­iosyn­os­ta­sis

Your Baby & Toddler - - Contents -

Our daugh­ter was born on 24 Novem­ber 2013 at 4:55am on a Sun­day morn­ing. I had had a healthy preg­nancy, apart from be­ing un­com­fort­able for most of it, and I hadn’t been able to do as much as I had when preg­nant with her brother. But that said there were no med­i­cal is­sues and we were able to have a home birth with her at our East Lon­don home, which was a lovely ex­pe­ri­ence.

Hadas­sah was a chubby, pink, beau­ti­ful baby but both my hus­band, Dun­can, and I were con­cerned about her head shape. We wrote it off as a weird shape from the birth process and hoped it would sort it­self out.

Hadas­sah was a bril­liant sleeper and lazy eater at first, so much so that I started to lose my milk due to her ir­reg­u­lar eat­ing habits. I tried all the tricks to wake her, strip­ping her naked, rub­bing ice on her feet – and she just slept. She was alert when awake, so we were rather puz­zled, and we took her to our GP to make sure there wasn’t some­thing se­ri­ously wrong. He checked her over and didn’t seem to find any­thing con­cern­ing, ex­cept for com­ment­ing on her head shape. I told him I had her six-week check-up with the pae­di­a­tri­cian the fol­low­ing month and said I would bring it up with him. Now our ini­tial con­cerns were made more real. Fast for­ward a few weeks to 10 Jan­uary 2014, and our trip to the pae­di­a­tri­cian. He took one look at her head and ex­am­ined it by feel­ing the su­tures (the cracks in the skull). This was where we learned a new word, cran­iosyn­os­to­sis.

New­born ba­bies are born with gaps or “cracks” in the bones of their skull. The skull bones re­main un­fused for few years, al­low­ing the skull and brain room to grow. But if the skull is al­ready fused at birth, it causes the head to grow ab­nor­mally, and can re­sult in pres­sure on the brain, which can cause brain dam­age. So it is very im­por­tant to as­sess if there is pres­sure and al­le­vi­ate the pres­sure as soon as pos­si­ble.

We were sent for a CT scan the fol­low­ing week to see the ex­tent of Hadas­sah’s con­di­tion. The CT re­sults con­firmed the pae­di­a­tri­cian’s di­ag­no­sis and we were then re­ferred to a neu­ro­sur­geon. Hadas­sah had a fu­sion of the sagit­tal su­ture, a term called scapho­cephaly, Greek for “boat head”. The neu­ro­sur­geon as­sured us that there was no in­ter­cra­nial pres­sure, but ad­vised us to con­sider surgery to rec­tify our daugh­ter’s head. He rec­om­mended that we see a team of doc­tors in Cape Town at Tyger­berg Hos­pi­tal. We would need to take her for an ini­tial eval­u­a­tion where they would as­sess the ex­tent of her con­di­tion and then de­cide on a course of ac­tion.

In Fe­bru­ary we trav­elled to Cape Town for our baby girl to be as­sessed by an ar­ray of spe­cial­ists. This was quite an ex­pe­ri­ence! Tyger­berg Hos­pi­tal is a state hos­pi­tal, and we ar­rived at the hos­pi­tal at 7am and joined the queue to open a folder for our child. By 12pm we were fi­nally called through by Dr Gelden­huys, and my

and felt out of my depth. Only one par­ent was al­lowed to stay at the hos­pi­tal with Hadas­sah. I found this very hard, es­pe­cially when all the other moms in the ward seemed to have ev­ery­thing so to­gether. For­tu­nately we had an in­cred­i­ble sup­port group – we could al­most feel the prayers of our friends and fam­ily.

The morn­ing came, and our girl was first on the theatre list. I gave her the pre-med and kissed my baby good­bye. We had de­cided be­fore that Dun­can would go through with her to theatre. I walked with them to the doors. Once she was wheeled through the doors a weight lifted off my shoul­ders. The time went quickly and soon we were back in the ward wait­ing for Hadas­sah.

The op­er­a­tion went quicker than ex­pected, and went well. We were di­rected to in­ten­sive care to see our baby. The nurses in the in­ten­sive care were in­cred­i­ble, they were so car­ing to­wards us and to­wards their pa­tients.

The fol­low­ing day Hadas­sah was re­leased from ICU, and only given Panado as a painkiller. That evening the swelling on her head started, which we were warned about. Her eyes were swollen shut, for about two days, which made her grumpy, but as soon as the swelling went down her mood im­proved. She strug­gled to keep her milk down so we re­sorted to tiny feeds more of­ten. This seemed to work quite well.

We were kept in hos­pi­tal un­til the Mon­day, but had to come back on the Wed­nes­day for a small check-up and then had to scram­ble to find trans­port back to East Lon­don. We were also told to come back in Novem­ber, on her birth­day, to have the plates re­moved. This went off with­out a hitch.

We don’t think we could have made it through this tough time as well as we did if it weren’t for our church, fam­ily, friends, doc­tors and strangers who helped us out the way they did.

We have since meet an­other two chil­dren with the same con­di­tion, one liv­ing in East Lon­don and an­other in Cape Town when we went for her first an­nual check-up a few weeks ago.

We are telling our story to raise aware­ness for the con­di­tion and to let par­ents know that there is amaz­ing sup­port out there when go­ing through some­thing like this. Al­though I would never have wanted this to hap­pen to our daugh­ter, our fam­ily is much stronger hav­ing gone through this ex­pe­ri­ence. YB

Hadas­sah’s skull su­tures were fused to­gether

Ador­ing her big brother, Hadas­sah is do­ing well

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