When All They Had Was Love

7/25/2019 When All They Had Was Love

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When All They Had Was Love

It is the worst fear of every parentbut for Sandy and Tim Church, the nightmare was real.When their baby was being born, the doctor had whispered, "h, no," and the little girl was

hurried away to intensive care.!ittle !eah was born with a huge, misshapen head that was lled with #uid. Where her brainshould have been there was almost nothing. It was unli$ely the girl would live, the doctorssaid, and if she did, there was no evidence she would ever be able to see or hear or spea$.

The only real %uestion for Tim and Sandy Church was& Where would they li$e their baby!eah to die'(ut their answer had nothing to do with death at all.

Sandy church was desperate for a glimpse of her new born daughter. She craned her nec$ asher wheelchair rolled past the high windows of Intensive Care )ursery. (ut she could seenothing. *very shade was drawn."+ow sic$ is she, Tim'" Sandy as$ed her husband. p from her memory rose the sound of

doctor-s whispered "h, no" when he saw the baby-s enlarged head on ultrasound. Secondsafter !eah-s birth, the nurse had whis$ed the baby away with her head wrapped in towels,and Sandy had been too groggy with pain$illers to demand an eplanation. /or 01 hoursafter her emergency Cesarean, she was delirious with fever from a massive pelvicinfection. Where is Leah?she wondered frantically. Why are they hiding her?

)ow as she and her husband approached the nursery entrance, Sandy shivered, 2+er headis 3ust a little bit big, isn-t it, Tim'4 she as$ed ghting panic. +er tall, fair husband was silentas they moved past a row of incubators and came slowly to a standstill.

2It-s worse than the pictures I showed you,4 he admitted to her. 2Those were ta$en fromfront....4(leary5eyed with fever, Sandy slowly focused on the incubator before her. There, smotheredin a ma6e of tubes, lay a tiny baby girl with a head bigger around than her body was long.

The mass that protruded from the bac$ of her head prevented her from turning it.Sandy clutched her stomach and stared. The baby was terrifying. +er head was so enlargedthat her ears were pushed into her nec$.2)o7 )o74 Sandy whispered. "h, )o7" She was ashamed to spea$ aloud the thought thatrushed, unhidden, to her mind& She can't be mine.Sandy was sobbing now, so loudly that nurses bac$ed her wheelchair swiftly towards thedoor. Tim, white5faced and mute, too$ her hand."What on earth is wrongwith her'" Sandy wailed. "8lease, tell me, what made her thatway'""+9:;C*8+

brain tissue. "9our baby has the worst case I-ve ever seen."The doctor told them the baby could die. Sandy thumped in the pillows and fought downtears."(ut if she should live'" Tim as$ed. "Then what'"

The doctor shoo$ his head. "/rom what we can tell, she would have very little chance foranything beyond a vegetative eistence."

The C


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newborns operate at brainstem level. The lm showed a well of blac$ness inside the ovalsthat outlined !eah-s misshapen head.Where the thin$ing part of her brain should have been, according to C


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"It-s li$e she-s as$ing me to ght for her," Sandy said. "(ut the doctors say there-s nothing toght for."")othing to ght for'" /ran$o seemed incredulous. +e san$ into a chair and loo$ed straightat Sandy. "!et me tell you about this little girl of yours. !ate last night, I was changing !eah,holding the incubator door open with my elbow. It slipped and slammed shut. !eah 3umped.She startled, Sandya baby who-s supposed to be deaf7


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Sandy clung to his words, and to those of the young neurosurgeon called in for anotheropinion the net day."We may create worse problems with shunting in a case this etreme," :r. ames ohnsonac$nowledged, "


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29ou may have to wait a little longer, =rs. Church,4 the doctor advised her when she and Timwent for tests the following winter why she hadnJt gotten pregnant. 2I suspect you have atubal bloc$age, but that needs to be conrmed by special N5rays.""+ow epensive are they'4 Sandy as$ed tensely, thin$ing of their struggle to lay asidemoney for the cows that Tim was acHuiring. In two years he had bought eight. < ranch handfor ten years, wor$ing @B5hour days subsistence wages, Tim $new that raising a herd was

the way out.2The cost is about O@EE,4 the doctor answered. The tests would have to wait. When, 3ust amonth later, Sandy began feeling nauseated and tired, she chal$ed it up to everythingecept pregnancy. *verything, that is, until her doctor tested her and announced, laughing,2The impossible has happened, =rs. Church. 9ou are pregnant. Congratulations74Sandy barely touched the ground for the rest of her pregnancy. If ever a child was meant tocome into the world, she and Tim told each other, it was this one who-d proved the infertilityepert wrong.

Nothing Left, !e#t LoveThe infant who emerged from surgery a little after @@ a.m. on September @@ was one tinymass of bandages and oygen tubes. (ut she was alive. That alone was a miracle.-When can we hold her'" Sandy demanded."Ta$e it easy there, =om," 8aul /ran$o answered. "She-s still on oygen." +e smiled,remembering the Sandy Church who-d been wheeled out in tears only a wee$ ago."She needs to be held,4 Sandy insisted. "We can-t leave her lying there alone...""The minute we get her oL oygen," /ran$o promised, "and the doctors give the o$ay, youcan hold her."

The feeling that #ooded through Sandy later that wee$, when the nurses placed !eah in thearms for the rst time, bloated out everything. 2The bulging s$ull, the rows of stitches, theiodine soa$ed dressings, all dropped away. Transed, she sat loo$ing into the wide5spacedeyes555light blue, li$e TimJsthat pee$ed out at her from between bandages. Maybe yourenot perect, Leah Marie, but youre all mine, she thought."Sandy, there-s a problem with the shunt," she heard her husband saying. Then :r. Woodeplained that the medium5pressure valve he-d installed, hoping to let #uid pass graduallyenough to prevent s$ull collapse, wasnJt doing the 3ob. !eahJs head was still growing so fasther incision threatened to brea$ open."When she made it through the surgery alive, I thought weJd beaten the odds" Sandy told

Tim, even more devastated than she-d been at the outset. ")ow there-s another battle forher to ght."!eah was producing cerebrospinal #uid at the normal rate, but without the brain surface thatnormally absorbs the #uid. The 3ob of removal fell entirely on the shunt, and therein lay thenew problem."(egin pumping the shunt by hand,4 :r. Wood instructed the nurses. =anual pumpingby

pressing the thumb directly into the spot where the shunt was implanted55seemed to be theonly way to stabili6e !eah-s head growth and $eep her alive.It was a losing battle, Sandy and Tim would wal$ the two bloc$s to the hospital from thedingy downtown motel where they were now staying, and watch !eah-s sutures rupture asher head ballooned.

Two wee$s later :r. Wood returned !eah to the operating room and replaced the originalshunt valve with a low pressure one. The #uid began #ushing more rapidly through the tubeand into the babyJs abdominal cavity, but her head continued to grow more than acentimeter a day.


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9et, somehow, in deance of all logic !eah held on. *ven on her worst days she reacted to atouch from her parent and responded to their voices 55 or so it seemed to Sandy and Tim. Itwas hard to be sure when they $ept hearing that such responses were medically impossible,and every other sign pointed to imminent death.Within a day of !eahJs second surgery, the neurosurgeons were forced to resort to a headtap, a delicate and dangerous procedure. :r. Wood inserted a needle into !eah-s s$ull and

gently suc$ed out ecess cranial #uid into a syringe. It wor$ed, at least temporarily.(ut how many more of the taps could !eah survive' With each passing day, Sandy and Timfell themselves moving closer to the moment they-d been dreading since :r. ohnson hadrst encouraged them to institutionali6e !eah. Gradually, the choice too$ shape, in all itshorrible simplicity& Where did tbey want !eah to be when the time came for her to die'Surely, they thought, death was inevitable.When they analy6ed the facts, it was all so logical. If they too$ !eah home, they-d have topump her shunt by hand, around the cloc$, and wal$ her to the hospital several times awee$ to have her head drained.


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2!eah-s is ours, Sandy. She deserves to be held and cuddled and $issed, and loved everyminute until the time comes for her to die. She doesnJt deserve to be left with strangers.4Let with strangers. The words made SandyJs insides twist with long buried pain. She wantedto run, and $eep on running, but she had nowhere to go. :esperate, she turned on herhusband, and the truth he was forcing her to recogni6e. When she heard her voice, shrill andfrantic, she barely recogni6ed it as her own.

2!eave, Tim, please. ust leave, and donJt come bac$,4 she shouted, not even $nowing wherethe words came from. The instant she spo$e, she $new it was a terrible mista$e. The manshe had lived with for a year and half would do anything rather than Huarrel. (ut on this, hewould not bac$ down.


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!oving !eahJs was the easy part of than cold, dar$ )ovember. It was everything else thatwas hard.


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"What on earth is wrong'" Sandy as$ed, rushing around the corner."!eah heard that, Sandy7 She heard7" Tim repeated.

une Collins stood over !eah, watching her face. "Sandy, she 3ust tried to turn toward thenoise. We both saw it""


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I $now," Tim answered, "That-s what I-m trying to do."


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In an instant. Tim was bending over !eah, calling her name. +e lifted her from her crib, andshe went limp in his arms.2h, no,4 he whispered, laying her gently on the #oor. +er whole body was blue.#his is what death loo$s li$e,Sandy thought, It's come. Suddenly, !eah twitched and gaspedfor air.2We-ve got to get her to the hospital,4 Tun told Sandy.

Within moments of their arrival, the emergency5room doctor eplained, 2This child is havinga grand mal sei6ure.4 +e summoned a colleague and two nurses to a treatment room. Sandyand Tim paced the hallway, terried.29our daughter will be all right,4 the doctor reported when he emerged from the treatmentroom. 2(ut it was a close call. +ad you not found her when you did. shemight have died fromrespiratory arrest. +ydrocephalic children can have serious sei6ure disorders.4

Tim and Sandy shoo$ their heads. +ydrocephalus had yet another monstrous face. Whenthey drove out of the hospital lot at a.m., they $new that they would never rela their vigil.

They $new, too, that they had no time to lose in seeing :r. Guggenheim.

$Not *ust Any Brain+'Sandy was full of Huestions as she and Pic$i =c:onough strolled !eah into :r. Guggenheim-sclinic in (illings on September @D. @ABD. !eah was now one year and two wee$s old. It had

been months since she had been seen by any specialist. She was a diLerent child, andSandy and Tim $new it. (ut would they ever hear that from a doctor'

The waiting5room door opened, and :r. Guggenheim waited toward Sandy with outstretchedhand "+ello, =rs. Church." she said with a smile. Then the doctor $nelt down. "


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Sandy thought of the blea$ months in the motel room, of the hours spent roboticallypressing the blac$ N mar$ on her scalp, all in hopes of relieving !eah-s suLering. )ever hadthey reali6ed that rain epansion was possible.:r. Guggenheim said, 2!eah clearly understands most of what-s going on, and she-s playinggames we-d epect of any baby her age. She-s @0 months old, and already she-s saying twoto four identiable words. In her social and language development, I really thin$ she-s Huite

normal.4Sandy had to ght down the urge to race home right then to tell Tim. She sat stro$ing !eah-schee$ and beaming at Pic$i =c:onough.2There-s still more water than I-d li$e to see, and her brain structure is not entirelynormal,4 the neurologist continued. 2She may have trouble with her motor s$ills and perhapssome learning problems at she gets older, but I-m cautiously optimistic that she will showsubstantial improvement.4ere it comes,thought Sandy. "Get used to the idea of operations," the doctor counseledsoberly. "


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!eahJs face lit upin eactly the way it always did when Sandy or Tim came towards her.

When All They Had Was Love

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