Pediatric Brain & Spine Center

A PARENT’S GUIDE TO CRANIOFACIAL

The Weill Cornell Medicine Pediatric Brain and Spine Center

Please talk with your child’s care team about how Covid-19 may have temporarily changed the details within this booklet. WELCOME ………………………………………………………………………….……...... 3 Your Craniofacial Surgical Team Craniofacial Clinical Coordinator How to Reach Us Our Offices

PREPARING FOR SURGERY ……………………………..………………...... ………….….... 4 Before the Surgery About Blood Tests Pre-operative Ophthalmologic Evaluation Skin and Hair Preparation Additional Instructions Child Life Your Responsibilities Blood Donation Pre-operative Phone Call

DAY OF SURGERY...... 6 What to Bring to the Hospital Arriving and Checking In After You Check In Medical Consent TABLE OF CONTENTS TABLE

SURGERY AND HOSPITAL STAY...... ………………………………………………...... ……….….. 8 The Surgery The Waiting Room After the Surgery In the PICU Vital Signs

RECOVERY AND FOLLOW-UP...... ………………………………………………...... ……….... 9 Your Child’s Recovery Stitches, Dressings, and Bandages The Incision Swelling Diet and Digestion About Pain Discharge From the Hospital At Home Shampoo Following Up

ABOUT THE SURGERY...... ………………………………………………...... ……….…..11 Surgery for Endoscopic Surgery Open Surgical Procedures

ABOUT THE HELMET...... ………………………………………………...... ……….…..12 Pre-Operative Helmet Evaluation Helmet Introduction Decorating the Helmet

A PATIENT’S STORY...... ………………………………………………...... ……….…..13

COMMUNITY DIRECTORY...……………………………………...... 14 Friends of the Weill Cornell Craniofacial Team Advances in Science Hotels and Temporary Housing Parking Places to Eat at NYP

Cover photo of Kennedy McConnell courtesy of Heather McConnell 2 Your Guide to Craniofacial Surgery WELCOME WELCOME ………………………………………………………………………….……...... 3 We Are Here for You Your Craniofacial Surgical Team Craniofacial Clinical Coordinator How to Reach Us e understand that a child’s surgery is a significant event for you, and our team wants Our Offices Wto help your family through the process. In this guide, you will find information about what to expect before, during, and after your child’s procedure. While your child is under the PREPARING FOR SURGERY ……………………………..………………...... ………….….... 4 Before the Surgery care of the craniofacial team at the Komansky Children’s Hospital, the doctors, nurses, and About Blood Tests staff will be here to support you before, during, and after your child’s procedure. Please ask Pre-operative Ophthalmologic Evaluation us questions at any time. Skin and Hair Preparation Additional Instructions Your Craniofacial Surgical Team Child Life Your Responsibilities Blood Donation Pre-operative Phone Call

DAY OF SURGERY...... 6 What to Bring to the Hospital Arriving and Checking In After You Check In Medical Consent

SURGERY AND HOSPITAL STAY...... ………………………………………………...... ……….….. 8 The Surgery Caitlin Hoffman, MD Mark M. Souweidane, MD The Waiting Room Neurosurgeon After the Surgery Neurosurgeon In the PICU Co-Director, Craniofacial Program Vice Chairman, Department of Neurological Surgery Vital Signs Weill Cornell Medicine and Professor, Department of Neurological Surgery and Pediatrics NewYork-Presbyterian Director of Pediatric Neurosurgery RECOVERY AND FOLLOW-UP...... ………………………………………………...... ……….... 9 Weill Cornell Medicine and NewYork-Presbyterian Your Child’s Recovery Stitches, Dressings, and Bandages The Incision Swelling Diet and Digestion About Pain Discharge From the Hospital At Home Shampoo Following Up

ABOUT THE SURGERY...... ………………………………………………...... ……….…..11 Surgery for Craniosynostosis Endoscopic Surgery Thomas A. Imahiyerobo, MD Dr. Jeffrey Ascherman, MD Michelle M. Buontempo, MSN, Open Surgical Procedures Plastic Surgeon Plastic Surgeon RN, CCRN, CPNP Co-Director, Craniofacial Program NewYork-Presbyterian/ Craniofacial Clinical Coordinator ABOUT THE HELMET...... ………………………………………………...... ……….…..12 NewYork-Presbyterian/ Columbia University Weill Cornell Medicine and Pre-Operative Helmet Evaluation Columbia University NewYork-Presbyterian Helmet Introduction Decorating the Helmet How to Reach Us Our Offices A PATIENT’S STORY...... ………………………………………………...... ……….…..13 Office Phone: 212-746-2363 Manhattan COMMUNITY DIRECTORY...……………………………………...... 14 Office Fax: 646-962-0118 1305 York Avenue, New York, NY 10021 Friends of the Weill Cornell Craniofacial Team Surgical Paperwork Fax: 646-962-0117 Brooklyn Advances in Science 263 Seventh Avenue, Brooklyn, NY 11358 Hotels and Temporary Housing For questions related to insurance Parking Queens Places to Eat at NYP approval and authorization, please 163-03 Horace Harding Expressway, 5th Floor contact the surgical coordinator at Fresh Meadows, NY 11365 646-962-3774. Your Guide to Craniofacial Surgery 3 PREPARING FOR SURGERY 4 Your Guideto Craniofacial Surgery P to learnmore aboutthebuilding. nyp.org/locations/david-h-koch-center the lobby. Pleasevisit may alsoregister at the self-serve kiosks in through thebuildingwithoutthisband.You “smartband.” You willnotbeable to move you withapersonalized identification the building.Your Ambassadorwillprovide greet you at DHK andguideyou through There willbeaPatient Ambassador to Before theSurgery Helmet” onpage 12. Helmet” procedure beingperformed. Your childmay need to wear ahelmet after surgery. See “About the We may provide additionalinstructions about how to prepare forsurgery, basedonthe typeof Additional Instructions surgery. Donotaddany lotion, oil, orcreams to your child’s hair. of infection, please wash your child’s hairwith Aveeno Unscented Baby Shampoothenight before Your child’s hairwillbe shaved where the surgical procedure willtake place. To help lower therisk Skin andHairPreparation exam. craniosynostosis are at riskfor increased brain pressure, whichcan bescreened for withadilated eye ophthalmologist to obtain abaseline exam around thesurgery date. Some children with We may refer your childto an Evaluation Pre-Operative Ophthalmologic The buildingisaccessible from York Avenue anddriveways onEast 68 unitat:services draws. Appointments will be scheduled inadvance for your child’s blooddraw at the pre-operative Your childwillrequire at least oneblooddraw priorto surgery. Some children willrequire two blood About BloodTests scheduled date ofsurgery. Handoutsinclude: Pre-operative forms may besent inadvance or reviewed at the time of yourvisit,depending on your your child’s labwork. details ofyour child’s procedure, review the consent forms for research andsurgery, andschedule rior to surgery you willhave asurgical planningvisitwiththecraniofacial team to go over the New York, NY 10065 1283 York Avenue, 9thfloor NewYork-Presbyterian David H.Koch Center (DHK) • • • • Information about your child’s blood tests prior to surgery. at your pre-operative visit. An Anesthesia Questionnaire—this form willbe completed by thechild’s parent/guardian pediatrician andsent backto the surgical coordinator (fax: 646-964-0117). A HealthHistory andPhysical Examination form—this willbe completed by your child’s day before surgery. A letter abouthospital arrival time, whichincludes eating anddrinkingguidelines forthe th and69 th Street. PREPARING FOR SURGERY Your Guide to Craniofacial Surgery 5 Surgery Craniofacial Guide to Your • Allow one to two weeks for any employment-related forms to be completed and be completed to forms employment-related any for weeks two one to • Allow processed. transportation. difficulty with have if you know the team • Let upcoming child’s your about know them let to company insurance your contact • Please surgery. Pre-Operative Phone Call Pre-Operative your confirming call phone a pre-operative will receive you the surgery, before The business day to your child prior feeding stop to about when instructions You will be given and location. time arrival surgery. If you choose to pursue direct blood donation, please inform the craniofacial team as well as the team as the craniofacial please inform blood donation, direct pursue choose to If you The parent/donor Gail or Novolette). 212-746-4440 (ask for Blood Bank at NewYork-Presbyterian well as blood, as found in can be that a virus and antibodies for test a blood screening undergo must need an additional blood child may blood type and your child’s your know must type. You blood for at least to donate, center a blood donation to the donor will go has occurred, Once screening draw. Please it will be discarded. If the blood is not used during surgery, of surgery. in advance one week this option. explore wish to early if you inquire Families may choose to have blood donated directly to their child from a parent or close family or close family a parent their child from to directly blood donated have to choose may Families their child and the for not necessarily a match are parents that know to It is important member. started be must donation of direct The process be used during surgery. not be able to blood may surgery. before weeks four approximately Some children may need a blood transfusion during surgery. Blood comes directly from the New the New from directly Blood comes during surgery. need a blood transfusion may Some children in blood centers nonprofit community-based, independent, one of the largest Blood Center, York and Jersey, New York, in New nearly 200 hospitals to blood products The NYBC provides the world. states. surrounding Blood Donation Your Responsibilities Your For a helpful video about Child Life and preparing your child for surgery, visit nyp.org/komansky surgery, child for your and preparing Life video about Child a helpful For Child Life Child social and therapists, pet therapists, Life Child has dedicated Hospital Children’s The Komansky inform Please experience. surgical child’s your during additional support offer who can workers from benefit a sibling of the patient—would or patient child—either the your feel if you the team To offered. are also tours Pre-operative surgery. of in advance therapist with a Child Life meeting 746-9970. call (212) please tour, pre-operative an in-person arrange What to Bring to the Hospital: Checklist

aYou should bring comfortable clothing for yourself, with flip-flops or shoes that can be taken on and off easily. It may be warm or cold in the hospital, so dress in layers and dress for comfort.

aBring your child's special comfort item, lovey, or favorite toy to the hospital.

aBring essential toiletries for your comfort. There is a parent bathroom where you can shower if desired.

aYou may want to purchase infant Tylenol (acetaminophen), and Aveeno Unscented Shampoo prior to surgery.

aAny other required medications DAY OF SURGERY DAY aReading materials

aPhone charger

aPhoto ID

aInsurance card

aYour child will be in a hospital gown for the majority of the hospital stay. Bring a pair of comfortable pajamas that zip/snap up the front for when your child is discharged and the first few days after surgery. You will want to avoid stretching clothing over your child’s head.

If you have questions about breast milk and breast milk storage during your child’s hospital stay, please ask your craniofacial team. If your child is on a standard formula, the hospital can provide formula for you. If your child uses a specialty formula, please ask about its availability at the hospital.

Do NOT Bring: a Valuables a Electrical devices (such as hairdryers and heating pads) a Linens. There is a pull-out couch at the bedside of each bed in the Pediatric Intensive Care Unit (PICU), and parents can remain with their child for the duration of their hospitalization. Linens are provided. Note that parents can stay in the PICU 24 hours a day during their child’s hospital stay. Young siblings or other young family members should not visit the PICU. Other friends and family members should be limited to two visitors at the bedside. Some families reserve a nearby hotel room for the duration of their child’s hospitalization. For a list of nearby hotels, see page 15.

6 Your Guide to Craniofacial Surgery Arriving and Checking In DAY OF SURGERY

You must arrive at NewYork-Presbyterian/Weill Cornell Medical Center approximately 90 minutes prior to your child’s scheduled surgery. During your pre-operative phone call, you will receive your arrival time. The entrance is at 525 East 68th Street (east of York Avenue), New York, NY 10065. (For information about parking, see page 15.)

Please note: The surgery time is approximate. If your surgery is delayed, you will be informed.

When you reach the hospital, please enter through the main entrance on East 68th Street, where you will go through security screening. After the screening, walk toward the information desk and make a right, then follow GREEN SIGNS toward the Greenberg Pavilion. Take the elevator to the third floor and follow signs to the pre-operative services area.

Please do not update your child’s name on the day of surgery by adding a middle name, initial, or suffix/prefix. It will delay your child’s procedure. Please check your child’s name and date of birth in advance on the chart and wristband for accuracy.

Check in on the third floor of the Greenberg Pavilion, 3 West.

After You Check In When you arrive in the pre-operative area, the peri- anesthesia staff will greet you. Your child will be weighed and have his or her temperature taken, then will be changed into a hospital gown.

At this time, a Child Life specialist can offer toys, crafts, or movies to help children scheduled for surgery feel more at ease.

Medical Consent A parent or legal guardian must be available on the day of surgery to discuss the surgical consent. You will be asked to sign the surgical consent form when you arrive. If you need a translator, please ask. Read it carefully. Make sure everything on the form is correct. It should include: • The patient’s name • The type of surgery being performed

The form also verifies that you have: • Talked to the team about the risks and benefits of surgery, and have had your questions answered • Agreed to the surgery • Agreed to the possibility of a blood transfusion when medically necessary

If you don’t understand something on the form, or if you have questions about the surgery, ask to speak with a health care provider before you sign the forms. You have the right to an interpreter at all times if necessary.

Your Guide to Craniofacial Surgery 7 The Surgery

hen the procedure is ready to begin, you will accompany your Wchild to the operating room. The anesthesiologist will put your child to sleep using inhaled anesthesia, and then an IV line will be placed. After the patient is asleep, family members go to the surgery waiting area down the hall from the operating room. Shortly after that, your child will have a breathing tube placed. Throughout the surgery, we monitor the patient’s anesthesia along with breathing rates and other vital signs.

During the procedure, your child will receive anesthesia, fluids, pain medication, and possibly blood products.

The Waiting Room Once the surgery begins, family members and caregivers may wait in our surgery waiting room on the third floor. At least one adult MUST remain in the surgery waiting area or close by throughout the surgery in case we need to communicate with you during the procedure. You will receive updates during surgery when necessary.

After the Surgery Shortly after surgery is complete, your doctor will meet with family members and caregivers to discuss the procedure and how your child is doing.

Your child will be moved from the operating room to the Pediatric Intensive Care Unit (PICU), where

SURGERY AND HOSPITAL STAY AND HOSPITAL SURGERY any post-operative needs are addressed by a dedicated and specialized team.

In the PICU After the surgery, expect to see your child connected to a machine that monitors breathing, pulse, and blood pressure. Your child will have an IV tube and a head dressing in place. The IV is used during and after surgery to administer fluids and medications. Once the child is drinking well after surgery and taking pain medications by mouth, the IV is removed.

Vital Signs After surgery, we closely monitor your child’s blood pressure, pulse, temperature, and breathing. A nurse will be in the room to check your child and respond to any changes in vital signs.

Parents can stay in the PICU 24 hours a day during their child’s hospital stay. Other visitors should be limited to two visitors at a time. No children under 6 years old may visit the PICU.

If your child is in pain, is hungry, or needs anything after surgery, please ask your bedside nurse. Your bedside nurse and the PICU team are available to assist you and your child with your needs.

8 Your Guide to Craniofacial Surgery RECOVERY AND FOLLOW-UP Your Child’s Recovery

Your child’s recovery begins immediately after surgery is complete and continues over the days that follow.

Stitches, Dressings, and Bandages Your child will have dissolvable sutures placed in the incision. A head wrap will be in place over the incision to help with swelling after surgery. The head wrap will be removed a day after surgery, or right before discharge.

The Incision The appearance of the incision depends on the type of surgery your child had.

Endoscopic: Your child will have a 3 to Cranial Vault Reconstruction: Your child will have a zig-zag 4 cm incision (about an inch and a half) incision from ear to ear. Incisions are closed during surgery with over their affected suture. Incisions are dissolvable stitches. The incision is designed to blend in once your closed during surgery with dissolvable child’s hair grows back over the incision line. stitches.

Swelling Swelling is a normal part of surgery. Your child may have significant swelling of the and over the eyes after surgery. Your child’s eyes may swell shut temporarily. Swelling is usually worst on the second day after surgery. Sitting upright, walking around (if appropriate), and time will help swelling improve. Mild swelling may persist for weeks after the surgery and is part of the expected post-operative recovery.

Diet and Digestion Starting to Eat: After surgery, children can Before After resume their regular diet once they are awake Photos courtesy of Kate Fullerton and showing signs of hunger. Patients may start with water, ice chips, or Pedialyte to make sure they can tolerate eating after their procedure. Most children can breastfeed once they show signs of hunger. If you plan to bring or pump breast milk at the time of your hospital stay, ask your bedside nurse about proper labeling and storage.

Bladder and Bowel Activity:Bladder and bowel needs depend on the type of surgery performed. For lasting more than two or three hours, a foley catheter (a tube inserted into the bladder) may be placed to help your child drain urine during surgery. The use of some pain medicines and/or the low levels of physical activity after surgery can cause some constipation. If constipation becomes a problem, your medical team will be available to respond to and treat these needs appropriately.

Your Guide to Craniofacial Surgery 9 About Pain Patients experience pain after surgery. Pain is how someone’s body responds to surgery or injury. • Pain can range from mild to severe. • Pain medications will be used after surgery and it is important that the nurses offer medications for pain before the pain becomes too severe. • Taking medicine regularly (including at night) is important to prevent severe pain. • Controlling pain helps a patient recover more quickly.

Tylenol is often used after surgery, and after your child is discharged, to prevent pain. You can give your child Tylenol every four to six hours, no more than five times per day. Talk to your medical team about what dose to give your child. Instructions will be provided on discharge.

Some children require stronger pain medication after surgery, and a medication such as oxycodone may be prescribed. Oxycodone in a liquid form can be difficult to obtain, so please be sure to pick up your prescription from the hospital pharmacy prior to going home. If you feel your child’s pain is not well controlled, please speak to your health care team.

Discharge From the Hospital The length of a hospital stay after surgery depends on the type of procedure performed and how quickly your child recovers. Once your child is eating, drinking, voiding normally, and on oral pain medication, he or she will be discharged from the hospital. Before you leave the hospital, we will give you instructions about recovering at home and scheduling your follow-up appointments.

At Home RECOVERY AND FOLLOW-UP RECOVERY Expect your child’s schedule to be “off” for a few days. He or she may require a couple of days to return to a normal sleep schedule and may eat more or less than usual. Your child should have at least three wet diapers daily and be producing stool daily. You may give your child a dose of Tylenol every four to six hours if needed. Tylenol is often required in the evenings and mornings for a week after surgery for some children after a cranial vault reconstruction.

Shampoo Please wash your child’s hair on the third day after surgery and every day thereafter with unscented baby shampoo (Aveeno or other unscented shampoo). Do not wash directly on the incision or scrub the incision line. Allow the soapy water to run over the incision and pat dry. Please apply Bacitracin once per day to the incision. Please call the office at 212-746-2363 if you have questions or concerns about your child’s incision or if your child has redness, drainage, or swelling at the incision line, or fever after surgery.

Following Up Patients should expect to see the nurse practitioner within one week of surgery to make sure the incision is healing well. You will also have a follow-up with the plastic surgeon and neurosurgeon.­ Expect to come to the office for regular follow-ups until one year after surgery.

10 Your Guide to Craniofacial Surgery ABOUT THE SURGERY Surgery for Craniosynostosis

urgery is the only effective treatment for craniosynostosis, because fused sutures must be opened Sto allow the brain to expand. This is not something that will happen naturally, and a child cannot “outgrow” craniosynostosis. A skilled surgeon must create new openings in the to allow for the rapid brain growth that takes place in the first year of life.

There are several surgical options for treating craniosynostosis. It’s usually best to perform surgery at just a few weeks to a few months of age, since the skull bones are the softest and most malleable then. The craniofacial team that evaluates a child will recommend the best surgery based on which suture closed prematurely, the degree of deformity, and the age of the patient.

Endoscopic Surgery In the simplest forms of single suture synostosis in a young infant, minimally invasive endoscopic surgery may be an option. An endoscope is a long tube that fits through tiny incisions. An attached light and camera allow a surgeon to see under the skin without having to make a large incision.

Although the results are excellent with either corrective form of surgical treatment (traditional cranial vault vs. endoscopic repair), there are many advantages to the minimally invasive approach: • Shorter surgical time, including less time under anesthesia • Smaller incision • Reduced risk of infection • Lower risk of blood loss and transfusion • Shorter hospital stay

The minimally invasive approach is best for younger infants (typically less than 4 months of age), since the extremely rapid brain growth of early infancy helps reposition the cranial bones after surgery. The soft, malleable skull of a very young baby also makes it easier for a surgeon to open the sutures using only small incisions. After five months, a baby’s skull starts to become thicker and less malleable, making endoscopic visualization and manipulation more difficult.

Although all patients are evaluated on a case-by-case basis, younger babies are generally considered better candidates for endoscopic surgery and older babies usually undergo the traditional cranial vault approach.

Helmet therapy after endoscopic surgery helps reshape the baby’s head—see page 12 for more information about helmets.

Open Surgical Procedure Traditional open surgical procedures are described as cranial vault remodeling and vertex craniectomy; they are extremely safe and produce excellent results. In this surgery, a neurosurgeon removes the affected or closed suture and then “remodels” the skull. This type of surgery is offered to children older than 4 months of age or who have multiple suture craniosynostosis, where more than one suture has closed too early. The surgery usually takes between four and six hours and requires three to five days in the hospital, depending on the age of the child and which suture is involved. Some children need blood transfusions during the surgery.

No helmet therapy is needed after open cranial vault remodeling or vertex craniectomy.

Your Guide to Craniofacial Surgery 11 ABOUT THE HELMET 12 Your Guideto Craniofacial Surgery uncomfortable inthehelmet, itmay needto bere-fit, whichis common withthefirst helmet. A helmet shouldnotbeuncomfortable after a few days of wearing it.If your childseems to be any concerns aboutredness, orproblems withcontact points ofthehelmet. should monitor your child’s incisionandskinevery day whileinthehelmet andimmediately report child wears it(seetypical schedulebelow, butdiscussyour child’s schedulewithyour orthotist). You and appliedwithinseven to ten days. Over thenext week you willgradually increase thetime your About three days after surgery, your childwillbescanned for thehelmet, whichisusuallydelivered company willobtain insurance authorization for your child’s helmet inadvance ofsurgery. your childwillhave ahelmet evaluation by atrained orthotist close to yourhome.Theorthotics Children whohave endoscopic surgery willwear ahelmet after theprocedure. Before thesurgery Pre-Operative Helmet Evaluation updated information sheet aboutHelmet Decoration options. If you wishto decorate your child’s helmet, pleaseaskfor an Paula Strawn (custom painted helmets): [email protected] Bling Your Band: blingyourband.com Babbleworthy: itsbabbleworthy.com Etsy.com: Search “cranial banddecals” decorate theirchild’s helmet. helmet. Below are afew companies ourpatients have used to After thefirst few weeks, it may befun todecorate yourchild’s incision duringthe healing process. because aclearhelmet allows theteam to monitor your child’s do notdecorate your child’s helmet until the incisionishealed, Parents often askaboutdecorating theirchild’s helmet. Please Decorating theHelmet stopped. The orthotist andcraniofacial team will work together to determine whenhelmet therapy shouldbe precautions orsignificant limitations onactivitiesduringthistime. skull shapecan regress ifhelmet therapy isdiscontinued too early.) Your childwillhave no special (Although thebaby’s headshapeiscorrected withinthefirst three or four months after surgery, the The helmet needsto beworn for 21to 23hours aday until thechild reaches 9 to 12months ofage. it cleanandtake abreak, andthenremove itagain for anhourfor bathing andcleaningthehelmet. Day 6:Wear fulltime,21to 23hours aday. Remember to take thehelmet offinthemorning to wipe then wear to bedovernight. another one-hourbreak, thenwear another4hours, andrepeat. Take aone-hourbreak before bed, Day 5:Take wipeclean,check offhelmet inmorning, for redness, leave off1hour, wear4hours. Take Day 4:Wear 4hours on,1houroff, repeating until bedtime,then wear tobed overnight Day 3:Wear 3hours, remove for 1hour, repeat 3to 4times Day 2:Wear 2to 3hours, remove for 2hours, repeat 4to 5timesuntil bedtime Day 1:Wear 1to 2hours, remove for 3hours, repeat until bedtime Sample Schedule(Many parents usemealtimesasthebreak.) Helmet Introduction Photo courtesy ofSara Finne A PATIENT’S STORY continued on the next page page on the next continued Your Guide to Craniofacial Surgery 13 Surgery Craniofacial Guide to Your

t 9 months old, John “Win” Melvin loved the ocean and ocean the “Win” John old, loved Melvin t 9 months Lovingly and bathtime! buckets, things into dropping pools, a Winifred, name, his middle as Win (short for to referred

One for the “Win” Column the “Win” for One Melvin of Mimi courtesy Photos Dr. Hoffman ordered a CT scan to confirm her suspicion of sagittal synostosis. Win did a great job great did a Win synostosis. sagittal her suspicion of confirm to a CT scan Hoffman ordered Dr. who technologist radiology the to grateful were and his parents scan, during the asleep of staying surgery the and diagnosis Dr. Hoffman’s confirmed The CT scan ready. to be for him waited patiently Monday. following the for scheduled was The Melvins, still trying to reorient themselves given this sudden turn this sudden given themselves reorient to trying still The Melvins, surgeon call him—the plastic I, as patients Dr. Thomas Imahiyerobo—or with Dr. met next of events, was super “He operation. during the head Win’s reshaping Hoffman with Dr. work who would Dr. that confident but still in shock, away walked Rory and she noting that Mimi remembers, helpful,” go anywhere to need don’t you at Cornell of their son. “Here care great take would I Hoffman and Dr. else.” opinion anywhere a second get to have didn’t we like felt “We Mimi recalls. else,” At 9 months, Win was too old for the endoscopic option. Dr. Hoffman Dr. option. the endoscopic old for too Win was 9 months, At called surgery, open the traditional need he would his parents told remodeling. vault cranial Mimi and Rory were concerned, of course, but they thought they they thought but they of course, concerned, were Mimi and Rory to return quickly and hospital at the Hoffman check in with Dr. would Mimi be fine,” he would thought “We lives. scheduled their regularly emergency at the Win first who saw resident But the remembers. he that tell could them. “We which worried concerned, seemed room really weren’t “but we resident, Mimi said of the something,” knew diagnosis and the confirmed she in, came Hoffman Dr. Once sure.” Dr. age, Win’s Due to surgery. needed their baby that couple the told soon. the surgery he have that recommended Hoffman Win showed no visible symptoms, but at his nine-month well-baby visit, the pediatrician noted that that noted the pediatrician visit, well-baby his nine-month but at symptoms, no visible Win showed most are plates unfused the head where spot”top of an infant’s “soft (the at the fontanel Win’s the separates that suture the suture, sagittal The on his skull. and he had a ridge hard, was obvious) sagittal shape. Suspecting an abnormal skull causing had fused early, skull, of the sides and left right at Caitlin Hoffman see Dr. Win to and Mimi take Roy that recommended the pediatrician synostosis, and NewYork-Presbyterian—immediately. Medicine Cornell Weill Craniosynostosis, which occurs in one out of 2,000 live births, is births, live out of 2,000 in one which occurs Craniosynostosis, An early. too fuse skull bones of the individual when the caused by flexible joined plates, separate made up of five is skull infant’s accommodate to expand to skull the allow that sutures bands called sutures the its full size, reaches brain When the growth. brain rapid cannot brain the early, too hardens of those sutures or more If one fuse. plates and the harden expands, and grows as the brain skull results in a misshapen This normally in all directions. expand development. cognitive hinder it can cases and in severe family name), the little boy kept his parents, Rory busy— Mimi, and parents, his kept boy the little name), family completely were They way. other had it any have wouldn’t and they but nine months, at a diagnosis of craniosynostosis for unprepared back— baby happy had their soon they Hoffman, Caitlin Dr. to thanks ever. than better A A PATIENT’S STORY 14 Your Guideto Craniofacial Surgery to take himbackto Dr. ifhe Hoffman keeps at it!” letting his head surgery get inthe way. Mimi says, “He’strying to scale ourbookcases now—we’ll have scary, butit’s going to be abadweek andthen it’s over.” Asfor baby he’s Win, growing upfast andnot For otherparents going through Rory the samething, andMimihave onethingto say: “It’s really everything!” Hoffman,” says Mimi.“I would walk through fire forthe two ofthem...we owe andDr. Hoffman Dr.I received. “For abadsituation, we hadthebest experience we could have hadwithDr. IandDr. It was week awhirlwind andahalffor the Melvins, andthey were sothankfulfor the supportthey night—less thanaweek since thesurgery—Win was totally backto himself. knew he was going to be fine. They took himhome onFriday, just four days after surgery. BySunday longer needed painmedicine. Itwas then that hisparents’ concerns started to melt away andthey and actingmore like himself asthe swelling went down andhe no the corner andhiseyes started to openupagain.” Winstarted looking eyes. “Itwas scary,” Mimiremembers, “butby the third day heturned surprised to see him:hisheadwas swollen andhecouldn’t openhis intensive care unitto beginhisrecovery. Rory andMimiwere The surgery went well, andWinwas admitted to thepediatric was backto the waiting room for the sixlonghours ofsurgery. Rory lovingly heldWinashewas administered theanesthesia. Then it and Dr. Iwalked thefamily to the operating room, where Mimiand After Win was admitted and prepped forthe procedure, Dr. Hoffman their home to NewYork-Presbyterian/Weill CornellMedical Center. On theday ofsurgery, theMelvinswalked theshortdistance from research trials, andwe would welcome your participation. what isknown about craniosynostosis. You may beinvited to participate inmultiple clinical evaluating the advances ofmedicine and contributing tothe bodyofclinical research and technologies, surgical techniques, andplansfor follow-up. Ourteam isdedicated to Research isanintegral partofacademic medicine. Research helps usto evaluate new Advances inScience other parents to share their experience andhelpyou through this. talk to others whohave walked inyour shoes.Thefamilies listed below have agreed to talk to We know how stressful thisentire experience can be, and we know how muchit can help to Friends of theWeill CornellCraniofacial Team [email protected] Christine Batillo 914-844-1161 [email protected] Heather McConnell631-513-1381 [email protected] Diana Estevez 646-221-5498 Endoscopic Families [email protected] Kimberly Liao626-382-8700 [email protected] Sandra Olaya 646-643-3632 [email protected] Nathaniel Towolawi 646-327-7572 [email protected] Mimi Pitney 610-574-9342 Cranial Vault Families COMMUNITY DIRECTORY Your Guide to Craniofacial Surgery 15 Surgery Craniofacial Guide to Your M-F, 7 am to 7 pm 7 am to M-F, Courtyard Marriott Hotel Courtyard locations) (Two 92nd Street 410 East Avenue 866 3rd Phone: 800-321-2211 between vary can rates Cornell guest Weill depending on weekend/weekday $200’s-600’s Hotel The Bentley 62nd Street 500 East Phone: 888-664-6835 depending 200’s-400’s between vary can Rates on weekend/weekday McDonald House Ronald Street 73rd 405 East 10021 NY York, New are (rates room per night $35 per $35 deposit, change) subject to Cornell Weill from a social worker will need You so please contact stay, your help coordinate to a request to like if you’d team craniofacial your about housing additional information For room. visit please and requirements, rmh-newyork.org/guest-services/guest-experience rmh-newyork.org/guest-services/guest-experience Laurence G. Payson House Garage House G. Payson Laurence Street 71st 426 East 212-746-1977 Garage House The Phipps Avenue 1285 York 212-746-1979 Au Bon Pain a week days a day/7 24 hours Main Lobby: 3 pm 7 am to M-F, Lobby: Pavilion Starr 4th Floor Greenberg: Atrium, Center Heart Perelman Places to Eat at NYP at Eat to Places Helmsley Medical Tower Garage Tower Medical Helmsley 70th Street 507 East 212-746-1974 Parking Garage Pavilion The Greenberg 68th Street 525 East 212-746-2015 The Garden Café Café The Garden 212-746-6368 8 pm 6 am to Friday, through Monday 8 pm 7 am to and Sunday, Saturday building main hospital of the “B” Level Affinia Gardens Hotel Affinia Gardens 64th Street 215 East Phone: 866-233-4642 $300’s-400’s from range can rates Their guest year and time of on weekend/weekday depending Fitzpatrick Manhattan Hotel Manhattan Fitzpatrick and 57th) 56th (btwn Avenue 687 Lexington Phone: 800-367-7701 from range Cornell Weill for rates Their guest depending on weekend/weekday $300’s-400’s Helmsley Medical Tower Medical Helmsley 70th and 71st) (btwn Avenue 1320 York Phone: 212-472-8400 at your child is a patient that mention to Be sure Cornell Weill NewYork-Presbyterian on the depending $200’s-300’s from range can Rates week of year and day of the time Parents can stay at the bedside during their child’s during their child’s the bedside at stay can Parents use hotel to like also Some parents stay. hospital before or stay, their child’s during accommodations nearby few a are Here procedure. the after and/or hospital. the to convenient hotels Hotels and Temporary Housing Temporary and Hotels 525 East 68th Street, Box 99 New York, NY 10065 212-746-2363 weillcornellbrainandspine.org/craniofacial

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